A word from our President . . . . . . . . . . 2

Latest News . . . . . . . . . . . . . . . . . . . . . . . . 3

Farewell and Thank You to Dr Beatrix Wonke . . . . . . . . . . . . . . . . . . 9

News from around the country . . . . . . 13

Medical News . . . . . . . . . . . . . . . . . . . . 14

Patient News . . . . . . . . . . . . . . . . . . . . . . 16

News from around the World . . . . . . . 21

Events . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Office News . . . . . . . . . . . . . . . . . . . . . . . 23

Membership Application . . . . . . . . . . . 24CO

NTEN

TS

UNITED KINGDOM THALASSAEMIA SOCIETY

A Charity OrganisationRegistration Number: 275107

19 The BroadwaySouthgate Circus, London N14 6PH

Telephone: 0208 882 0011 • Fax: 0208 882 8618Email: office@ukts.org • www.ukts.otg

As hard as it seems to believe, Dr Beatrix

Wonke, Consultant Haematologist and

the vision behind the Thalassaemia Unit at

the Whittington Hospital (North London)

has finally retired, with effect from the end

of April 2004. Internationally renowned

for her pioneering work in the treatment

of thalassaemia, Dr Wonke departs for

her well-earned retirement also enjoying

the unparalleled love and respect of her

thalassaemia patients and their grateful

families. Earlier this year Dr Wonke’s

outstanding career in medicine was

formally honoured when she was awarded

the Order of the British Empire, presented

by the Prince of Wales at Buckingham

Palace.

After 26 years at the Whittington

Hospital, many of Dr Wonke’s patients

know her almost as well as she knows

them – and even though they are aware

of her aversion to fuss and frills they

could not let her go without having the

opportunity to pay their tributes and show

her how much she will always mean to

them. They decided to arrange a surprise

leaving party – and so began a stealth

operation worthy of MI5. Letters were

sent to all corners of the UK and some

much further afield, inviting patients, their

families and colleagues to the event, with

strict injunctions not to breathe a word in

case rumour should leak back to Dr Wonke

herself. The venue (The Atrium Suite at the

Royal Free Hospital), caterers and flowers

were arranged, speeches were written and

finally, on the evening designated with the

connivance of Dr Wonke’s family (23rd

April) all was ready.

Almost unbelievably, Dr Wonke had

no suspicion that when she walked into

the Atrium she would be greeted and

applauded by nearly 200 people including

her children and grandchildren as well

as her “thalassaemia family”. George

Constantinou (acting as MC for the

Dr Beatrix Wonke retires– farewell to a pioneer in the modern treatment of thalassaemia

July 2004 ISSUE NUMBER 98

evening) made a short speech of welcome,

to which an emotional Dr Wonke

responded. Thereafter the guests enjoyed

an excellent buffet supper before the

commencement of the formal speeches,

usually the least interesting part of any

event but on this occasion the highlight

of the evening. First was Emma Prescott,

Thalassaemia Nurse Specialist at the

Whittington Hospital and Dr Wonke’s close

and trusted colleague of more than 12

years. Emma performed brilliantly, keeping

the audience in gales of laughter with tales

of her experiences with Dr Wonke, first

describing her times as a junior sister in

the thalassaemia clinic and, in later years,

her international travels with Dr Wonke to

conferences and clinics overseas. Emma

bore up bravely until, finally describing

how a huge clap of thunder sounded as

Dr Wonke cleared her desk on the last

day, she broke down, as did the rest of

us, including Dr Wonke and her family!

It was a wonderful tribute to a beloved

colleague and mentor and we are proud

to reproduce a transcript of Emma’s speech

on page 9.

There followed a number of speeches

from long-standing patients of Dr Wonke’s,

some of whom had first come to her as

children and who now stood before us

as adults, professionals and in some cases

parents. Above all, their words brought

home how Dr Wonke had inspired them

Continues on page 3 ➡

www.ukts.org2

Mike Michael President

Costas Kountourou Vice-President

Maria Gavriel Secretary

Olga Demetriou A Secretary

Nina Demetriou Treasurer

George Constantinou A Treasurer

Avraam Demetriou Committee

Menuccia Tassone Committee

Andreas Yiannikou Committee

Dear Member

Welcome to the July issue of Thalassaemia Matters. This feature packed edition has the full story of Dr Wonke’s retirement party and an in depth interview with Dr Shah.

On the medical front we have a piece about the new portable MRI unit from the Royal Brompton Hospital bring the T2* sequence to the thalassaemics up and down the country. Just think a non-invasive test that shows iron loading in both the heart and liver.

Dr A. Mandeville, a clinical health psychologist working in the NHS provides us with an interesting report into the psychology of thalassaemia; this is still an area of thalassaemia that requires a great deal of research.

Thalassaemia awareness and the dissemination of information are some of the major concerns for any society and in this issue we have some reports from around the thalassaemia world both nationally and internationally:

Launch of The National Screening Programme

UKTS, on the nurses workshop held in May 2004

ABRASTA, the Brazilian Association of Thalassaemia, on their conference

To provide balance for all of this important medical information we have a selection of personal experiences and news from around the world.

Finally I would just like to remind thal’s traveling abroad during the holidays to remember the following:

Take all your medications;

Take a letter from your Dr to explain why you have these drugs;

Adequate travel insurance (see last issue, or phone the office);

Look after yourself; and most importantly,

ENJOY YOURSELVES

Until the next issue

M. Michael President

A word from our President

The UKTSManagementCommittee

Aims & Objectives

of UKTS

■ The relief of persons suffering from thalassaemia.

■ The promotion and co-ordination of research in connection with thalassaemia.

■ To educate people on the problems of thalassaemia.

■ To offer counselling to sufferers and carriers.

■ To bring together patients, their families and well-wishers to exchange ideas and information.

■ To raise by any legal means the funds required for the above activities.

Thalassaemia Matters ...continuing the fight against Thalassaemia 3

The NHS Sickle Cell & Thalassaemia

Screening Programme (formerly the

NHS Haemoglobinopathy Screening

Programme) has been established since

2001. The Screening Programme is

part of the wider UK National Screening

Committee. The overall aims are to

implement a linked antenatal and newborn

screening programmes for sickle cell and

thalassaemia. And raise awareness of these

disorders and improve understanding of

the value of the screening.

Newborn screening: The policy for newborn screening in

England is for the phased implementation

of a programme, which will allow the

offer of sickle cell screening to all infants

as an integral part of the newborn

bloodspot screening programme. The

technology currently used can also

detect � thalassaemia major, but cannot

reliably detect the other variants e.g. �

thalassaemia intermedia

Screening newborn babies for sickle

cell disorders is being integrated into the

established bloodspot or ‘heel prick’ test

taken at 5 to 8 days after birth.

Newborn Screening Programme Aims:To achieve the lowest possible childhood

death rate and to minimise childhood

morbidity from sickle cell disorders.

Antenatal screeningThe policy for antenatal screening in

England is for the phased implementation

of a programme, which will allow the offer

of sickle cell and thalassaemia screening

to all women as an integral part of early

antenatal care.

Thalassaemia screening using routine

blood indices will be offered to all women

in England, ensuring that they are aware

they are being screened.

The form of screening for haemoglobin

variants will depend on the prevalence

of the condition. Universal laboratory

screening is to be offered in those trusts

identified as covering high prevalence

populations by end of 2004/5. All other

areas will be required to offer, as a

minimum, laboratory testing for variants

based on an assessment of risk determined

by a question to women about their ethnic

origin by end of 2005/6. A list of high and

low prevalence trusts is available from the

following website:

http://www.kcl-phs.org.uk/

haemscreening/Lab_Policy.htm#Prevs

Antenatal screening for sickle cell and

latest news

NHS Launch Sickle Cell & Thalassaemia Screening Programme

to see thalassaemia as a condition which

can be managed. How her determination

to see her patients as people who could,

with treatment, lead normal lives gave

them the courage and hope to believe

in themselves and in what they could

achieve. How she had treated them with

honesty and compassion, encouraging and

sometimes bullying them into adhering

to their treatment, caring more for their

eventual wellbeing than for appearing

“nice”. This is real love and the words of

Dr Wonke’s patients showed how much

they appreciated it. We reproduce here on

page 11.

the speech given by Neelam Thapar,

who first saw Dr Wonke at the age

of nine, now a thirty-five-year-old

professional woman with a string of

university qualifications and a successful

career. No-one who reads Neelam’s words

can be in any doubt of the patients’

devotion to Dr Wonke nor of how she has

inspired them to carry on as she would

wish, notwithstanding the void which

her departure leaves in their lives. Other

tributes followed from Andy Charalambos

and Pany Garibaldinos.

Flowers were presented from UKTS and

the Thalassaemia International Federation

and a champagne toast was drunk. As

a final mark of their esteem, Dr Wonke’s

patients presented her with an engraved

glass obelisk and £1,300, which they

had collected for her to buy a painting

to remember them by. Dr Wonke, almost

overwhelmed by this gesture, bravely made

a speech of thanks which brought us once

again to laughter and tears.

Although the farewell to Dr Wonke

was undoubtedly an emotional occasion,

it was also very positive in that those

present were left with an indelible

impression of the hope and inspiration

which can be given to others by one

remarkable individual. UKTS congratulates

the committee of patients from the

Whittington on having organised such a

marvellous evening. Their hard work and

time spent certainly paid off and they can

be proud of having provided a unique

occasion; which no-one present will ever

forget.

Continues from page 1

Continues on page 4 ➡

www.ukts.org4

latest news

thalassaemia is being offered through

midwives.

Antenatal Screening Programme Aims:To offer a sickle cell and thalassaemia

screening programme to all women and

couples in a timely manner in pregnancy to

facilitate informed decision making.

Progress of ImplementationThe implementation of the newborn

screening programme is underway, as of

June 2004, 56% of babies born in England

are being offered screening for sickle cell

disorders and the rollout of the newborn

screening programme should be complete

by March 2005.

The implementation of the antenatal

programme is also underway beginning

with the rollout of screening for sickle cell

and thalassaemia in high prevalence trusts

in the first instance. Further information is

available from the following web site:

http://www.kcl-phs.org.uk/

haemscreening/

Training & EducationAdequate training of health care

professionals is key to the successful

implementation of the Programme.

The Programme has commissioned the

Regional Antenatal Co-ordinators to

manage the training of Midwives and

Health visitors in their regions. The aim will

be easily accessible training, enabling the

Health care professionals (HCPs) to:

• Be aware of the screening

programmes polices and timetable for

implementation

• Have an understanding of what

haemoglobinopathies are and

pathophysiology of the disorders

• Have a basic understanding of the

genetics and how it is inherited

• Have an understanding of the screening

process

• Be aware of what treatments are

available and the impact of treatment

• Be aware of the prevalence in their areas

• Be aware of practical issues related to

taking blood spot samples for newborns

and the timing of for antenatal

screening

The Programme has also commissioned

the PEGASUS Network to develop

and deliver training for sickle cell and

thalassaemia screening for all relevant

Health Care Professionals. To develop

training for the professional functions

in relation to newborn and antenatal

screening for sickle cell and thalassaemia.

The overall aims are:

• To research, develop and facilitate

training that enables health care

professionals to respond proactively

and effectively to haemoglobinopathies

and those they affect, as part of the

implementation of national screening

for sickle cell and thalassaemia.

• To promote appropriate knowledge,

skills and attitudes, including effective

communication skills and responding to

diversity, among NHS professionals in

relation to haemoglobin disorders.

• To promulgate the mainstreaming

of genetic education in the NHS by

emphasizing generic and transferable

learning.

The PEGASUS Network plan to be up

and running by January 2005

Communication & Raising Awareness

The Programme has commissioned

Media Strategy Limited to work with

the key stakeholders to produce a public

awareness campaign and raise awareness

in healthcare professionals and users

about antenatal and newborn screening

programmes. The objectives are to:

• Improve the publics awareness of Sickle

Cell & Thalassaemia in order to improve

the acceptance of being screened in

communities at highest risk and within

the general population

• Improve the visibility of sickle cell and

thalasssaemia within communities at

highest risk and within the general

population

The Programme had its official launch

in Birmingham on 7th July 2004 linked to

the opening of the newborn laboratory

extension at Birmingham Children’s

Hospital and the Sickle Cell Awareness

Month. Ms Elaine Miller (Assistant Co-

ordinator UKTS) alongside representatives

from the Sickle Cell Society and health

care professionals have been media trained

and numerous spokespeople have been

involved in the awareness campaign so

far. The Screening Programme would like

to take this opportunity to thank all those

that have supported and participated in all

aspects of the implementation.

Community EngagementThe Programme has also commissioned

Dr Karl Atkin based at Leeds University

to start the process of community

engagement with the aim of exploring

how ideas about faith and religion mediate

South Asian and African-Caribbean

communities’ broad views of screening for

haemoglobinopathies and more specific

attitudes to pre-natal diagnosis and also

produce recommendations for the wider

public awareness campaign.

Evaluation ProcessThe Programme is also in the process of

commissioning organisations to evaluate

the communications strategy and to

make recommendations on improving

the process of targeting the stakeholder

groups. It will also advise on the approach

to evaluation and the impact of these

developments.

Sandra Anglin,

Programme Implementation Manager

July 2004

Continues from page 3

Thalassaemia Matters ...continuing the fight against Thalassaemia 5

latest news latest news

Please tell us something about your

background – eg where you were

born, educated etc. Do you have any

children?

I was born in Pakistan and came to

England as a baby. I grew up in London.

After I qualified as a doctor I did my basic

training in local London hospitals and

then went on to do my haematology

training on the University College London

Hospitals rotation. I have four children.

When did you know that you wanted

to study medicine? What made

you interested in working with

thalassaemia?

I have wanted to be a doctor ever since I

can remember.

When I worked at the Whittington

hospital in 2000 as part of my

haematology training I saw the way

Dr Wonke and Dr Parker looked after

their patients and became interested

in patients with Haemoglobinopathies.

They both actively encouraged me

to consider working in thalassaemia.

My pivotal moment really came in Dr

Wonke’s clinic when I saw a patient who

had not been transfused sufficiently

and had thalassaemic facies and growth

retardation. I then worked with Professor

John Porter to gain more experience in

thalassaemia and also to understand the

scientific concepts behind management

of thalassaemia.

What do you think are the most

important elements of a successful

thalassaemia unit?

The most important element that

underpins the provision of a good service

is the ‘patients’. Our job is to encourage

and support the people who live with

thalassaemia in all that they do, so they

can lead long and healthy lives due to

good adherence to treatment. From the

delivery of service perspective the things

that contribute greatly to a successful

unit is a combination of excellent

nursing, well informed doctors with an

interest in thalassaemia management,

good laboratory support and access

to professionals with expertise in

thalassaemia complications related to

their specialities.

Do you see thalassaemia treatment as

a co-operation between patients and

medical staff?

There is no doubt in my mind that people

who live with thalassaemia day in day out

all their lives are experts in the realities

of living with thalassaemia. The good

doctor is the one that encourages them

to lead productive lives and fulfil their

dreams but at the same time educates

and encourages adherence to treatment

so that the quality of life is good enough

for them to achieve their aims.

Which attributes do you think make a

good doctor?

Sound clinical knowledge and a never

ending thirst to find better ways of

treatment.

To have the courage to deal with

things that might be difficult.

The ability to listen to what the patient

is telling you, not just verbally but by

their actions as well.

Approachability (your patient

should have the confidence to tell you

everything and know that they will never

be judged by you but be supported and

guided instead)

How do you think you can make a

difference to the patients under your

care?

The Whittington thalassaemics have had

one of the most highly respected doctors

in the world looking after them for many

years.

I am a different person, younger and

with a different style. I will continue to

provide the Whittington thalassaemia

patients with the highest standard of care

that they have always received. I hope

that once everyone meets me we can

develop good working relationships.

With regards to ‘make a difference’

that will depend very much on each

individuals needs and requirements.

If you were not a doctor, what would

you be?

If you asked me this when I was younger

I would have said architect. Now I would

say gardener!

Introducing Dr Farrah Shah, New Consultant Haematologist at the Whittington Hospital

Continues on page 6 ➡

www.ukts.org6

latest news

On 5th May 2004 UKTS was delighted to

present the first national conference for

nurses and counsellors of thalassaemia

patients, at King’s Fund, Cavendish Square

in Central London. We at UKTS have been

contemplating holding such an event

ever since the first national thalassaemia

doctors’ conference in June 2002; and

feedback from our national conference

in November 2003 convinced us that

this was the time to go ahead. Work on

the event began in early February 2004.

Invitations and posters were sent to all

the Thalassaemia Centres and treating

hospitals. The Organising Committee

(see below) who assisted UKTS in putting

together the conference are all nurses/

counsellors and the theme of the day was

“Nurses talking to nurses”. Our primary

aim was to reach those hospitals with

only one or two thalassaemia patients, as

we particularly wanted to make contact

with the staff there to ensure that they

had the opportunity to hear information

on the latest treatment and network with

colleagues from the larger centres. Happily

we received an excellent response from the

nurses and counsellors and by 5th May all

available places were taken.

The delegates were welcomed by

Mr Niall Dickson, Chief Executive of

King’s Fund and then followed the first

presentation from Mike Michael, our

President, on the subject of “Living with

thalassaemia”. As always, Mike’s laid-back,

self-deprecating style and humour were a

great hit with the audience as he described

how he faced the different stages and

experiences of life as a thalassaemia

patient. One of his concluding remarks

which really struck a chord however,

was; “I don’t live with thalassaemia

– thalassaemia lives with me.”

There followed presentations by Dr Anne

Yardumian (Overview of beta thalassaemia

major), Sr Andrea Hulston (Blood

transfusions, reactions & complications)

and Sr Lynne Mathers (The role of the

paediatric nurse in beta thalassaemia

major). After the lunch break the delegates

heard from Sr Emma Prescott (Adult

management, complications & endocrine

problems). Then followed an audience/

panel discussion session, chaired with

her usual flair and aplomb by Professor

Elizabeth Anionwu. This gave the delegates

the opportunity to put their questions to

the panel, mostly comprised of patient

representatives. The discussion was lively,

humourous and thought-provoking.

Although this was the longest session of

the day there was not nearly enough time

to address the many questions. The final

presentation of the day was “The latest

developments in chelation therapy” from

Dr Antonio Piga, who had travelled all the

way from Turin in Italy to be with us.

The delegates were asked to complete

evaluation forms so that we could get

their views of the day. We were naturally

delighted to discover that the response

was overwhelmingly enthusiastic and

very complimentary regarding the venue

and general level of organisation. The

Nurses Talking To NursesUKTS Host The First National Conference for Thalassaemia Nurses & Counsellors

What do you do to relax when you

are not working? Do you have any

hobbies?

Relax! Difficult to find the time! I do

like gardening however and when I

find things getting too much then a

couple of hours in the garden taking my

frustrations out on the weeds and pests

and nurturing my roses and lawn is time

well spent!

What is your most prized possession.

I prize no object but relationships with

people are very important to me. I never

choose to break off friendships and many

of the people I have looked after still

keep in touch with me.

What is your idea of perfect happiness

I am a realist, there is no such thing as

perfect happiness, but you can have a

good happy and productive life if you have

a good family life and excellent colleagues

such as Sister Emma Prescott and my

consultant colleagues to work with.

Continues from page 5

Nurses talking to nurses - no spare seats

Thalassaemia Matters ...continuing the fight against Thalassaemia 7

latest news latest news

comments section of the forms included

the following;

“Unbelievable to find an event of this

quality provided free of charge.”

“Fantastic – please make this an annual

event.”

“Well done UKTS – stimulating,

informative, great for networking - do it

again.”

“A motivating and inspiring day.

I would like to thank the patient

representatives for their openness and

honesty.”

“A well planned day from beginning

to end. This is the best conference I have

been to.”

Needless to say the response made the

hard work of planning the conference

worthwhile and rewarding. UKTS would

like to thank the members of the organising

committee for giving up their valuable

time to help us. We could never produce

events of this quality without their help

and expertise and we therefore gratefully

acknowledge the contributions of:

Joint chairs of the organising committee

Professor Elizabeth Anionwu CBE, &

George Constantinou of the UKTS

Management Committee

The organising committeeEmma Prescott, Lynne Mathers, Marjorie

Ferguson, Despina Karretti, Susie Davidson,

Christine Williams, Elaine Miller

Chairs, Presenters & Panel members (in alphabetical order)Prof Elizabeth Anionwu CBE, Head

of the Mary Seacole Centre for Nursing

Practice, Thames Valley University, Patron

of the Sickle & Thalassaemia Association of

Counsellors (STAC)

Mr George Constantinou, Asst

Treasurer, UK Thalassaemia Society, patient

representative, London

Dr Aamra Darr, Senior Research Fellow,

Centre for research in Primary Care,

University of Leeds

Ms Preeti Dhanak, State Registered

Nurse, patient representative

Ms Maria Gavriel, Secretary, UK

Thalassaemia Society, patient representative

Sr Andrea Hulston, Transfusion Liaison

Nurse, National Blood Service, Birmingham

Ms Maserat Lal, Leeds/Bradford

Thalassaemia Support Group, patient

representative

Sr Lynne Mathers, Paediatric

Thalassaemia Nurse Specialist, Birmingham

Children’s Hospital

Mr Mike Michael, President,

UK Thalassaemia Society, patient

representative, London

Dr Antonio Piga, Consultant Paediatric

Haematologist, University of Turin, Italy

Sr Emma Prescott, Thalassaemia Nurse

Specialist, Whittington Hospital

Dr Allison Streetly, National Director,

NHS Sickle Cell & Thalassaemia Screening

Programme

Ms Christine Williams, Chair of the

Sickle & Thalassaemia Association of

Counsellors (STAC)

Dr Anne Yardumian, Consultant

Haematologist, North Middlesex Hospitals

Prof Antonio Piga

Launch of New Mobile MRI ScannerFor a long time thalassaemia patients

throughout the UK have bemoaned the

fact that they had to travel to London

in order to undergo their heart scans.

However, a significant step towards

rectifying this situation has been taken with

the launch of a new mobile cardiovascular

magnetic resonance scanner. The scanner

was presented to the NHS Trust by CORDA

(The Coronary Artery Disease Research

Association), and we would like to

congratulate their magnificent fundraising

effort which made this wonderful donation

possible.

The scanner was launched by Her

Royal Highness Princess Alexandra at the

Royal Brompton Hospital on 15th April

2004. A reception was held afterwards,

during which Professor Dudley Pennell,

Professor of Cardiology and Director of

the Cardiovascular Magnetic Resonance

Unit gave an address thanking CORDA

and outlining the benefits of the scanner,

with particular reference to thalassaemia

patients. Professor Pennell gave the

encouraging news that over the past

four years, since cardiovascular scanning

has been available to patients, mortality

in thalassaemia has decreased by an

astounding 80% (ref. the Thalassaemia

Register). He also stated that the mobile

scanner has already made a trip to

Sardinia, where it was used on 300

thalassaemia patients. This enabled the

medical staff there to identify 5 cases

of previously undetected heart failure in

young people; of a severity which would

undoubtedly have led to death within the

year if left untreated. Happily, all 5 patients

are now being successfully treated and

Continues on page 8 ➡

www.ukts.org8

open letter to patients

Dear Patient,

As you are aware, Swedish Orphan

International are the distributors throughout

the UK, EU & several other countries of

Ferriprox (deferiprone) tablets.

Ferriprox tablets are manufactured

by Apotex of Canada. They have been

thoroughly researched for many years

& are now in fact licensed in over 40

countries worldwide for the treatment

of thalassaemia, with 9 other licence

applications pending. These tablets are

consequently freely available on standard

UK prescription from UK doctors.

As Ferriprox tablets have been licensed

within the UK & indeed throughout the EU

for over 3 years, we have been increasingly

disturbed in recent months to discover

that a significant number of UK & Swiss

thalassaemia patients have been receiving

a variety of unlicensed generic deferiprone

preparations. Such supply is completely

illegal when a licensed alternative is

available for physicians to prescribe.

Many (but by no means all) such patients

have been receiving these unlicensed tablets

under the auspices of “trials”, whereby they

are monitored as part of a “named-patient

program”. Such an arrangement basically

enables the treating hospital to receive as

many unlicensed deferiprone tablets as they

can acquire legally “within a trial protocol”.

The real motivation for doing so is clearly

the fact that the hospital obtains such

unlicensed tablets for free, as deferiprone as

a compound has already been extensively

researched for over 15 years, predominantly

in the form of branded Ferriprox.

The purpose of a clinical trial should

be purely to collate data regarding the

safety, efficacy or tolerability of a drug,

not to enable treating hospitals to obtain

cheap or free alternatives to established

licensed & researched products. Therefore,

the evident moral / ethical issue here is

should thalassaemia patients continue to

be enrolled into needless trials involving old

unlicensed preparations as a cost-saving

exercise, when no apparent outcomes are

being determined?

Throughout the UK of late, a number

of patients based in different parts of the

country have been receiving one particular

unlicensed preparation illegally. This

situation manifested itself late last year

after two particular patients experienced

serious side effects, since when more have

come to light. Clearly, neither Swedish

Orphan International nor Apotex ought

to be fielding calls from alarmed patients

& healthcare professionals when things

go badly wrong involving an unlicensed

deferiprone preparation not manufactured

by ourselves & one which is in fact distinctly

different in terms of both its physical

composition & its bioavailability within the

human body.

The Criminal Investigation Unit of the UK

Medical & Healthcare Products Regulatory

Authority is consequently investigating this

matter & assisting us to establish the full

extent of this illegal unlicensed deferiprone

usage.

In recent years Swedish Orphan

International have consistently supported

numerous initiatives & congresses held

both within the UK & in many countries

worldwide. More importantly, in-depth

clinical support & literature is also readily

available with regard to licensed Ferriprox.

By contrast, the 3 main suppliers of

unlicensed generic deferiprone provide

no financial support whatsoever to any

such events or initiatives & judging by the

number of enquiries this office receives with

respect to unlicensed alternatives outside

our responsibility, provide little if anything

with regard to clinical information to either

healthcare professionals or patients.

Thalassaemia patients should therefore

seriously consider (if they are presently

receiving any other form of tablet or

capsule than branded Ferriprox), why

they should be required to give written

consent to being unnecessarily “trialled”

on such drugs. They are perfectly entitled

to insist that they receive Ferriprox from

their physician, should they already have

been deemed suitable for any kind of oral

chelation. Furthermore, if no such consent

has been obtained from them, then an

even graver situation could exist.

In essence, Swedish Orphan International

wish to ensure that all thalassaemia

patients receive optimal treatment &

care appropriate to their individual needs

involving all available researched & licensed

chelators.

Paul Bellas.

Marketing Director Europe,

Swedish Orphan International

have an excellent prognosis. This clearly

demonstrates the life-saving capacity of

these wonderful machines.

Following the speeches, Princess

Alexandra unveiled a commemorative

plaque and was presented with a bouquet

by 11-year-old thalassaemia patient Shahi

Ghani (some of you may remember Shahi’s

mother, Mrs Fathima Ghani, who spoke

about her experiences as a parent at the

UKTS Compliance Workshop in 2002).

Shahi, who attends the Whittington

Hospital for his thalassaemia treatment,

is getting to be quite an old friend of the

royals, having previously met the Queen,

Princes William and Harry and the Duchess

of York! Three years ago Shahi became

the youngest ever patient to go through a

cardiovascular magnetic resonance scanner,

when he had his first scan at the age of

eight. Jennifer Jenks, Chief Executive of

CORDA, said “Shahi is originally from the

Maldives and his family moved over to

England so he could be treated, He is an

amazing boy who has shown immense

courage throughout his illness.”

Continues from page 7

Launch of New Mobile MRI Scanner

Thalassaemia Matters ...continuing the fight against Thalassaemia 9

open letter to patients farewell and thank you to Dr Beatrix Wonke

Most of us here tonight have no idea of the

life that has made you into the person that

we all know and love. So tonight Dr Beatrix

Wonke, this is your life.

Born in Budapest, at some point this

century, nobody is really quite sure when,

you had a very hard start, growing up under

the repressive communist regime governing

Hungary at that time. You were even denied

access to the education that you had always

craved. Your dream, from the age of six, to

be a doctor, was becoming evermore distant.

It was clear to you that if you were to remain

in Hungary, you would never fulfil this dream.

Following a short-lived and unsuccessful

revolution by the Hungarian people, you and

your brother embarked on a perilous journey,

to escape this oppressive regime. In order

to get there however, you had to negotiate

many obstacles, swimming across rivers in

the middle of the night, chased by patrol

dogs, sleeping rough during the day and

travelling under the cover of darkness, not

that dissimilar it seems to your time at the

Whittington Hospital. Nothing changes.

Once in Austria, separated from your

brother, you enrolled in high school and were

later offered a place in Switzerland to study

medicine. Apparently, in order to fund your

studies you waited on tables in a restaurant,

a restaurant where for some reason, no

one ever complained about the service. You

qualified as a doctor in 1963 and in the same

year moved to Highgate in London, where

you still live. A house, where your wonderful

children Andrea and Anthony grew up, and

where your beloved grandchildren now come

to play.

Having completed your post-graduate

training at the Royal Free Hospital in

1977, you were appointed Consultant

Haematologist at the Royal Northern

Hospital, a hospital that I know still holds very

fond memories for you. It was here that you

first developed your passion for thalassaemia,

something for which everyone here is

extremely grateful. Unfortunately, there aren’t

many colleagues of yours left from that era,

but there is however a formidable trio still

present, here tonight, namely: Theresa, Lynne

and Gareth. They have asked me to mention

just a few of the fond memories that you

all share. They are as follows: Gin kept in

a drawer, for times of extreme stress only.

Touting for cigarettes off somebody called

‘Butch’, for times of extreme stress only, a

‘mind blowing’ rendition of ‘O sole mio’,

and finally rushing into the lab with a blood

sample asking if someone could give you a

‘quickie’, a blood result that is. My favourite

however, is the story told to me yesterday,

of a time when a lymphoma patient of

yours asked you for a medical report for the

local court, stating that his chemotherapy

treatment had seriously affected his memory,

resulting in him forgetting to change his bald

tyres and renew his road tax. What we all

want to know is, did you write it?

In the mid 1980’s, you moved up to the

Whittington Hospital, which is where I first

met you 12 years ago, as an innocent and

naïve junior sister. I remember being called

to your office to introduce myself; and I can

safely say I speak on behalf of all the patients,

parents, doctors and nurses here tonight, you

will never have any idea what a daunting

experience that was. In your unique ‘Beatrix

Wonke’ style, you peered over your glasses

and said: ‘Well? What experience do you

have, what can you do for us?’ I remember

mumbling some sort of an answer, leaving

your office and praying to God that you

didn’t have many inpatients on Mercers

Ward.

But things changed over the years. You

introduced me to your thalassaemia family at

a very early stage, gradually bringing down

one patient at a time, thinking we wouldn’t

notice, very subtle. Then you opened your

own unit, a unit you fought for in your usual

tenacious and determined way. Next thing I

knew, I was sitting with you in your clinic at

9 o’clock at night, and I have never looked

back since.

The clinic: One of my first memories of this

clinic was when a teenager I had never met,

walked in looking very scared and very shifty.

Dr Wonke, you reminded me then as you

have done several times later, of my former

Latin teacher, another formidable woman

who could terrify you with one look. You

appeared to completely ignore this young

boy, your eyes pointedly scanning all his latest

test results. The room was deathly silent and

I sensed a feeling of doom in the air, just

as there had been that day I hadn’t done

my homework. Finally, you lifted your head

towards the boy, peered over the glasses, and

simply said; ‘Do you want to die? If you do

then please leave my clinic and do not waste

any more of my time.’ When the sobbing

boy left the room, you looked at me, winked,

and said; ‘Now he will do his treatment’.

I immediately thought back to my Latin

teacher and realised what you both have in

common and why I admired you both so

much, strong compassionate women, who

will defy all convention and stop at nothing

to get the very best out of your wards.

Another thing I realised very early on was

that, like your patients, I could never hide

anything from you, whether it was trying to

A Tribute To Dr Wonke By Her Colleague Sr Emma Prescott

Continues on page 10 ➡

Our President Mike Michael presents a bouquet from UKTS

www.ukts.org10

farewell and thank you to Dr Beatrix Wonke

cover up something I had forgotten to do, or

whether something was troubling me in my

personal life. Within seconds you would pick

up that something was wrong. As with your

many patients, you were interested in me,

Emma the person, not just your colleague

‘the nurse’, or in your greatly appreciated

words, your ‘partner’. My family and friends

who have never met you, but have listened

to the many tales about you, feel as if they

know you and all of them share in our

sorrow that you have to leave us.

But it isn’t just your own patients at home

you care about, you have changed the lives

of people worldwide. One of my first visits

abroad with you was to Calcutta. You might

remember that the trip really didn’t get off to

a good start, as a result of the plane missing

its front windscreen. Not to be beaten by

this very small inconvenience, you tackled

the desk staff in your usual diplomatic

style, concerned that we would miss our

connecting flight. I remember a young

smiling British Airways girl cheerily offering

us a flight to Bombay instead. When you

asked her if she could get us from Bombay

to Calcutta, she politely told you ‘No’, but

cheerily pointed it out that it was closer

than London. It was at that very moment

that I genuinely feared for her young life.

Surprisingly unlike you, you lost your temper.

However, as always, your belief that nothing

is impossible paid off. A fellow passenger

having overheard this discussion intervened.

As luck would have it her husband happened

to be the pilot on our connecting flight.

Within minutes she had called him and

instructed him to delay his flight until we

arrived, which as you may remember resulted

in 600 passengers having to wait over 2

hours, on a plane on the tarmac, until we

were ready to board. To add insult to injury,

within minutes of take-off, a message came

over the tannoy asking if you would like to

use the fax machine in the cockpit just so

you could let Calcutta know you might be

a little late. If I remember rightly, we were

shortly after, invited to join club class for

our ‘convenience’. Needless to say, we left

Calcutta airport pretty quickly the following

morning. But once again, this showed me

that with you Dr Wonke, absolutely anything

is possible.

On a more serious note however, once we

had arrived in Calcutta I witnessed something

that will remain with me for the rest of my

life, and that is, what someone like you,

can really achieve in a situation, which to

most people would seem impossible. We

saw many children, all of whom seemed to

be in a hopeless state. You could not and

would not accept this. Through your sheer

determination, strength, compassion and

basic common sense you made realistic and

achievable plans for these children, many

of whom I was delighted to see two years

later, doing extremely well, a tribute to their

own doctors and most importantly to you Dr

Wonke.

The most amazing lesson you have taught

me, and many other of your colleagues, is to

continuously fight for our patients, regardless

of what others say or do, and to this end,

you have quite happily, fallen foul of many

a manager at our hospital. Tirelessly, even

to the end, you have persistently battled

with anyone and anything that has stood

in the way of your patients’ well being. Just

last week during your hospital leaving party,

you continued to fight, in fact for someone

here tonight. Your words were; ‘Nothing

is impossible if you plan, she is not just a

test-tube with a number on it, what if this

was your daughter, wouldn’t you fight for

her?’ As one colleague put it; ‘Dr Wonke

is like a tea bag, you’ll never appreciate

how strong she is until you put her in hot

water’. Another innate ability of yours is to

‘sniff’ out other experts who can help in

your quest for better treatments for your

patients, whether it be an initially cynical and

reluctant reproductive endocrinologist, who

now, proudly informs anyone who will listen

that he has yet again, made a thalassaemia

woman pregnant; or the dedicated cardiac

team, past and present, that is: Malcolm

Walker, Lisa Anderson, Mark Westward, Sally

Holden and more recently Mark Tanner, who

have all asked me to tell you that they will

remember you with such affection and not to

forget all the fun times we’ve together. Sister

Bernadette Clark has specifically asked me to

mention what an inspiration you have been

to her and her nurses on Mercers Ward, and

to express how your dedication has ‘rubbed

off’ on even the most ‘trickiest’ of her nurses.

The last few weeks have been very difficult

for all of us here, but most of all for you Dr

Wonke. I watched you earlier this week as

you cleared your office of all the things that

remind us of how special you really are. You

have for many years collected pictures of the

children, not thalassaemia children but sons

and daughters born to your thalassaemia

patients. A direct snub to all those who said

it was not possible and an inspiration to all

those parents and patients worldwide who

still believe it to be impossible. I watched

how you carefully and lovingly dusted the

frames before handing them over to me

so that we may proudly display them in

our unit, and I really couldn’t imagine what

thoughts must be flowing through your mind

and what memories must be flooding back. If

anyone was in North London, that day, they

will have heard a tremendous thunderbolt at

that precise time; I rest my case.

Finally, it breaks my heart to see you

leave but it also heartens me to wish you

all the happiness that you deserve in your

retirement, so that you may now be a little

less selfless and enjoy time with your precious

family. I very much doubt whether I will

ever meet someone again like you in my

professional or personal life, but regardless of

whether I do or do not, I will always have the

spirit and the drive that you have nurtured in

me and as your partner, I promise you that I

will do everything in my power to ensure that

your tremendous work will continue. I thank

you for everything and I love you from the

bottom of my heart.

Sr Emma Prescott

Continues from page 9

Thalassaemia Matters ...continuing the fight against Thalassaemia 11

farewell and thank you to Dr Beatrix Wonke farewell and thank you to Dr Beatrix Wonke

On Friday 23rd April 2004, Dr Wonke was given a surprise retirement party which had been organised by her patients as a token of their appreciation and love for her and all that she has done for them. This is the transcript of the speech written and delivered by Neelam Thapar who has seen Dr Wonke since 1977 (at the age of 9) when Dr Wonke first started working at the Whittington Hospital.

Dr Wonke, ladies and gentleman and

friends

I feel very honoured to have been asked to

say a few words to Dr Wonke, on behalf of

all her patients - her Thalassaemia family.

Dr Wonke, what I am about to say is an

attempt to reflect the feelings of your

patients, including those that were not

able to attend tonight, in honour of your

retirement.

You started at The Whittington Hospital

in 1977 with just 25 thalassaemic

patients - you now have over 120 at the

Whittington but we cannot even begin

to put a number on how so many more

you see from all over the UK and other

countries. Thalassaemia was a word that

meant nothing to people at that time.

There was no continuity in treatment, let

alone any significant research in to what

was becoming an increasing health issue.

You were just given a small group of

patients and told to do what you could

with them.

In an interview for UKTS in 1995 you

said that when you first started you found

Thalassaemia “fascinating and rewarding”.

This fascination has led to a glittering

working career where you have shown

us, your patients, extreme dedication in

innovative patient care improving and

extending the quality of our life , and

have at the same time also established an

international reputation in taking forward

research into Thalassaemia. We were so

proud to find out about the OBE because it

is excellent recognition for all that you have

been to us.

Words cannot really express or do justice

to what we really want to say to you. How

can we put into words the emotions we

feel and the respect we have for you - to

say thank you is not enough to someone

who:

• has been more than our doctor but

who has ultimately given us the gift of

life;

• someone who gave hope to our families

when all they felt was despair;

• someone who was passionate in

believing in us when we did not believe

in ourselves;

• someone who did not allow us to say

can’t or won’t but tried to encourage

us to think that we can do anything we

set our minds to providing we comply!!

• Someone who gave us confidence to

reach our own individual potential and

to try and begin to address that fear of

the unknown

Dr Wonke, your achievements are

numerous and there are so many things as

individuals we can say that you have done

for us. As a collective Thalassaemia group,

a few of the significant achievements you

have done to balance and improve the

quality of our life include:

• You have treated us with respect - you

were frustrated with us having to be

treated, when we were actually adults,

in the childrens’ ward and you took us

out of there by having a vision; a vision

that would give us the freedom, to

have our treatment at a time that suited

us. You fought to get our treatment

room on the adult Mercers Ward, and

you gave us Emma Prescott for whom

we are SO grateful. You have then

continued to have a vision to get us a

bigger better Unit which is being built

at the present time.

• You encouraged our families to allow

us to lead a normal life and not be

over protective - your words were often

Dr Wonke with Emma Prescott and patients from the Whittington Hospital

Continues on page 12 ➡

www.ukts.org12

“you have to be cruel to be kind”

when talking about giving the injections

• You promoted our use of the Baxter

pumps to increase the volume of

iron chelation we could do in a more

accessible way to help us continue with

our day to day life

• You were willing to research and

support the use of the tablet for those

of us who could not comply

• You referred us to wherever was

necessary, whenever was necessary

- if we had any additional difficulty you

always knew someone that could help!!

• You revolutionised our medical care by

helping to develop and sending us for

the special MRI scans. We know how

difficult it must have been for you, to

see the very people who had grown

up before your eyes, struggle with the

news that they had iron in their heart

and liver and then you had to develop

care plans to reduce that iron overload.

• You developed and implemented

strategies that involved us - You always

tried to find a way around the system to

benefit us.

But that’s what you have done throughout

your career - you have not allowed

beaurocracy to get in the way of putting

our needs first. One of the things about

family is that members give unconditional

love and that is what you have always

given us.

We know how much pain you must

have felt when you lost a patient - where

we could spend time grieving for a friend

or relative, you often had to go straight to

a clinic to see more patients and put on

a brave face. But all the losses seemed to

make you more determined to fight for the

cause and help us help ourselves.

We have shared with you our times

of happiness, sadness, anger and pain.

Sometimes we have been too confused to

even begin to express what we felt and at

times you have had to be very strict, hard

and even nag us!!!!

How many times have you had to say

these words to us;

“Use your Pump, take your L1, why

are you not complying!!!!!, “you look

black as soot”

What ever you have said to us, you

have done with a great passion for

wanting us to lead “normal” lives. You

have never been frightened to be truthful

and tell us exactly what would happen if

we did not comply. Often you vocalised the

things that we knew but were too scared

to confront. It has to be said that for

those of us that have left school, receiving

a letter from you at home still feels like

opening an exam result!!

However, you have tried to make sure

that we do not see ourselves as “ill”

people but people that can move forward

to achieve our goals and aspirations and

look at what we have as evidence of that:

Amongst your Thalassaemia family seen

at the Whittington we have:

• children who now have a treatment

regime which leaves no room for any

doubt that they will be able to have the

very fun that perhaps some of the older

ones did not experience in the very early

days.

• People who are in their forties and even

fifties

• people who are blessed with children of

their own and even a grandmother

• people who have achieved certificates

and letters behind their name or are

working towards that

• working professionals with a range of

careers

• people who have devoted time in

voluntary work to help others in the

Thalassaemia world

All this progress we owe to you. You

have been an inspiration to those here

and overseas. Your contribution through

TIF and those that you have kept alive

internationally goes without saying. Your

capacity to embrace the cultural diversity of

the Thalassaemia world is a credit to you.

When I asked some patients what words

they would use to describe you, these were

some of things said:

“mother”, “my rock” “guardian

angel” “wonderful” “dedicated”,

“gave me love “, “empowered me”

I think they speak volumes about the

love we have for you inside and the impact

that you have had on our lives.

Dr Wonke, you have never let any

problem serve as an excuse but have

always tried to see it as an opportunity. In

1995 you also said that you did not like

people not realising their potential and not

even bothering to try - nearly ten years on

from that interview, we are testimony to

the fact that you have helped us realise our

own potential by keeping us alive.

We shall miss your compassion, your

strength and your motivation - however,

because of your direct openness with us,

you have made each of us experts in our

own treatment to be able to carry on and

make you truly proud.

As sad and emotional as we are, we

know that you now deserve to have time

to yourself and your immediate family. We

hope that you will enjoy your holidays,

going to museums and galleries, listening

to music as well as your favourite gin and

tonic!

We know that you enjoy gardening and

rumour has it that unlike us, your flowers

have never been anaemic, but we know

they will be the best ones in North London

if they have any of the love and attention

you have given us helping us grow.

Dr Wonke , your extended Thalassaemia

family thank you for all your dedication,

encouragement and support . We wish

you much health and happiness for the

future and we love you very much.

Thank you

Neelam Thapar

April 2004

farewell and thank you to Dr Beatrix Wonke

Continues from page 11

Thalassaemia Matters ...continuing the fight against Thalassaemia 13

farewell and thank you to Dr Beatrix Wonke news from around the country

UKTS Roadshow Visits Manchester

On a cool Sunday morning on the 4th of

July 2004, a team from the UKTS started

the long trip up the M1 to Manchester. By

7.30am, a van full of goodies was heading

up the motorway to meet with patients

and parents in Manchester.

Besides parents and patients from

Manchester, also in attendance were

patients from Leeds, doctors and counsellor

from the Greater Manchester area.

Over the 5 hours, topics discussed

were – screening programme, compliance

difficulties, handover of responsibilities

from parents to patients, bone marrow

transplant, career concerns, travel issues,

insurance schemes, oral chelation, and

last but not least, the role of UKTS and its

nationwide outreach programmes.

The UKTS looks forward to future road

trips around the UK. Nothing rewards the

team more than to make new friends,

share experiences, and most importantly,

empowering patients and parents with

knowledge on Thalassaemia.

We would like to thank Mrs Rasul and

her team for the excellent meeting and

hospitality. And we look forward to closer

ties in the near future.

On a lighter note, the visiting team

from UKTS would like to thank the mini-

van driver, Chris, who remained good-

humoured and helpful throughout the

day, despite having to ask for directions in

Manchester City Centre, heavy traffic and

rain on the return trip, and missing the first

30 minutes of Euro 2004.

If any other patient/parent group would

like a visit from the UKTS team, please do

not hesitate to contact the office either by

phone (0208 882 0011), fax (0208 882

8618) or email (office@ukts.org).

The future visiting team?

www.ukts.org14

medical news

I am a Clinical Health Psychologist for

the NHS in London. A substantial part

of my role is to work as part of a multi-

disciplinary team providing care in the

Sickle Cell and Thalassaemia Services at

UCLH. I have worked alongside Professor

Porter and his team since 1999 both trying

to support people with Thalassaemia and

helping the team find ways to provide

the best care possible for our patients.

Last year Professor Porter and I were

asked to speak at the TIF conference in

Palermo on our thoughts about ‘Quality

of Life’ in Thalassaemia. I believe that this

demonstrates the growing awareness

that living with Thalassaemia can be a

significant challenge to which services need

to respond in order to help patients adhere

to the complex medical monitoring and

treatments that are needed throughout

their lives.

This article gives a brief summary of my

own contribution to the TIF presentation.

It describes some of the research that

has been done into the psychology of

Thalassaemia. I have also included my own

thoughts about how we can try to help,

based substantially on what I have learned

from the people with whom I have had the

privelege to work with at UCLH.

Formal research into psycho-social effects

of chronic illness is important in that it

can both inform and improve our clinical

approach and also provide ‘evidence’

to help lobby for additional resources in

the light of its findings. Research studies

have been carried out into the psycho-

social aspects of Thalassaemia in different

countries. Many of these studies, however,

are limited by that fact that they have

been from small samples of people, which

means that there are doubts about the

extent to which the findings can be applied

to people with Thalassaemia ‘in general’.

These studies do however, point to the

fact that people with Thalassaemia may be

at risk of feeling significant anxiety about

their lives and condition, can feel they

have little control and can feel helpless in

the face of the disease. Some studies have

shown that children and adolescents are

particularly at risk of feeling ‘different’ from

their peers and that this can get in the

way of forming relationships or developing

a fulfilling work career. There are studies

which suggest that Thalassaemia can

cause significant stress in families and

close relationships. However, there are

some recent US studies which suggest

that adults with Thalassaemia are similar

to the general population in terms of

their general psychological health, family

relationships and their expectations of the

future. The reasons for the differences

between study findings are not clear, but

may be explained by differences between

treatment centres or the fact that care may

have continuously improved throughout

the 1990’s.

Life expectancy and general health have

improved dramatically in Thalassaemia

since the consistent availability of desferral

therapy, but the chelation regime places

a significant burden on patients who

have to face the challenge of adhering to

this treatment within the context of their

everyday lives. Such is the psychological

and social challenge of this regime that

Modell concluded that the main reason

for early mortality from Thalassaemia is

now psycho-social. Patients who have

the most difficulty adhering to their

chelation regime are most at risk from

developing complications. It is hoped

that the advent of the emerging oral

chelators will significantly ease this burden

and help patients to adhere more easily.

However, the issue of adherence clearly

goes beyond chelation therapy as most

Thalassaemics need to adhere to many

hospital appointments or treatments

for complications such as diabetes or

osteoporosis.

How to help patients adhere to their

treatments still remains a key issue for

those providing services. In 1998 we

conducted a study to understand more

about the experience of people at our

centre. This study confirmed many things

we might have intuited from ‘common

sense’. We found (similarly to other

research) that people in our services

suffered from lower levels of well-being

than the general population. People

who were highly distressed had the most

difficulty adhering to their treatment, but

it was difficult to be confident that distress

was causing problems with adherence, or

whether the difficulties with adherence

were causing distress. People who felt they

had a large supportive network around

them seemed to be better at adhering.

Interestingly, our research suggested that

people who had a high investment in their

doctor (rather than themselves) controlling

their treatment were better adherents.

This may be indicative of the importance

The Psychological Integration of Thalassaemics in the

21st Century

Thalassaemia Matters ...continuing the fight against Thalassaemia 15

medical news

of ‘trust’ in the doctor, which is arguably

extremely poignant when one has no

choice but to rely on the expertise of

another person to maintain one’s health.

Our research also suggested that patterns

of adherence were better in people who

believed strongly in their own capacity

to be an effective person in the face of

difficult tasks generally, than in people who

were less confident.

We also did several in depth interviews

about processes involved in adherence.

This research gave us some important

additional information. It suggested

that fully accepting the disease may be

important in helping to take treatment

consistently, as well as being able to

value ones health and take responsibility

for treatment. Interviewees said that

complications can actually be useful

in terms of acting as a ‘wake-up’ call,

helping people to fully take on board

the consequences of not adhering to

treatments. This may be particularly

important as the people we interviewed

commented that unlike illnesses such as

diabetes there is no immediate biological

‘feedback’ from missing treatment.

Interviewees also described a struggle

with processes such as ‘denial’. One person

expressed this by saying, ‘I think since I

was very little I always knew I would have

(Thalassaemia) for life. So it was a big time

span in my mind where I thought ‘if I miss

out on the odd day I can catch up’. It’s a

bit like a diet that you say you will start

tomorrow. But tomorrow never comes’.

Self consciousness may sometimes lead

to being selective about social activities

which may be exposing, such as going to

the beach and there was a general tension

about whether or not to keep the disease

‘secret’ from other people. Adolescence

was mentioned as a particularly difficult

time, whilst competing demands from

social and work commitments were a

theme in adulthood.

My own opinion of what is involved in

coping with the demands of Thalassaemia

comes from my experience of trying to

offer support to adults who are facing

particularly difficult challenges. I believe

coping with Thalasseamia involves a

complex interplay of many factors, which

actually start from a young age. As is true

for all of us our early experience tends

to form the ‘blue-print’ of our sense of

self and this can be particularly delicate

for young children trying to cope with

the ramifications of an illness such as

Thalassaemia. We can all relate to the

lasting effect of comments of bullies in the

playground in making us feel like we don’t

belong and that we are ‘different’ from

others and this can have a damaging effect

on self esteem. The presence of desferral

pumps, frequent visits to hospital or

missing time off school leave Thalassaemic

children particularly vulnerable. The way

teachers and parents help children with

Thalassameia cope can have a substantial

positive or negative impact in later life.

These types of things can still affect

confidence, even in adulthood.

If we are going through very difficult

periods in our lives such as bereavement

, separation, family or work difficulties

doubts about ourselves can be amplified,

perhaps ultimately leading to feelings of

depression and hopelessness about the

future. For people with Thalassameia the

demands of the illness and treatment can

seem absolutely overwhelming at times

of additional stress and a lot of courage is

needed to persist with life.

At such times the team must respond to

the needs of patients by taking the time to

really understand individuals’ circumstances

and emotions. In doing this the team is

then in a position to plan the best way to

help. Examples of this may include taking

decisions to defer non essential treatments

(such Hep-C therapy) at such times or

in extreme cases consider portacaths for

those who are just not doing treatment at

all. A psychologist can play an important

part in gaining a deeper understanding of

a person’s difficulties and helping the team

to plan the best response. In some cases it

has helped to provide individual psychology

sessions to look more closely at people’s

thoughts and feelings. My experience has

been that this can be helpful in allowing

people to express their true feelings

without fear of ‘burdening’ those around

them. This process may lead to people

seeing new ways of dealing with difficulties

or in helping them to reconnect to their

courage and passions which give them a

reason to carry on contending with the

challenges Thalassamia inevitably brings.

One study by Laerum (1987) found that

people with chronic illness may place more

value on close relationships, give greater

meaning to everyday activities and show

greater compassion towards people with

similar problems. I have certainly witnessed

this in the people with whom I have

worked who have continued to touch and

inspire me with their resourcefulness and

ability to ‘keep going’.

It goes without saying that access to

the best medical expertise and treatment

methods are pre-requisites to quality

of life and must form the backbone of

Thalassaemia services. Flexibility of clinic

and transfusion appointments to take

account of busy lives also seem to be

valued by our patients at UCLH. However,

there is much work still to be done to

increase our understanding of how we

respond to patients’ psychological and

social needs and how we can best support

them to maintain as much good health as

possible. More formal research is urgently

needed to help us explore and evaluate the

most important areas to target for further

intervention.

Dr Anna Mandeville

Consultant Clinical Health

Psychologist

Haemaglobinopathy Service

UCLH

medical news

www.ukts.org16

patient news

A parent’s experience(continued from Issue 97)

By Aggie Michael, President of the Thalassaemia Society of Singapore & mother of Valerie Kum, a 15 year old thalassaemia major patient.

The Cyprus conference in September

2002 was a workshop for the societies

representing Thalassaemics from around

the world. The representatives from most

European and American societies are

Thalassaemics themselves. Sadly, such a

grand, positive outlook has yet to reach the

Asian side of the world. Yet, to the handful

of Thalassaemics from India, Pakistan,

Taiwan and Singapore, the two days were

a moving experience. It was there that I

understand the true meaning of “leading a

life just like everyone else.”

During the tea breaks, we would mingle,

sit down with a cup of tea or coffee

and chat about work, family and kids.

There I realized that there is life beyond

blood transfusions, Desferal injections

and medication for Thalassaemics. There

is a whole world of friends and places

of interest out there beyond homes and

hospitals. There is so much to learn about

peace and chaos, control and freedom.

There is no limit to knowledge and

education. As we learn about treatments

of Thalassaemia from the doctors and

nurses, they in turn learn from the

Thalassaemics. It was an afternoon tea that

changed my life. It was at that afternoon

tea that I got to know Mike, my future

husband and President of UKTS.

There is something about Mike that is

silently reassuring. He projects the feeling

that he has all the time in the world for

anyone who needs a listening ear or a

shoulder to cry on. Like all successful

adult Thalassaemics, he has never

allowed Thalassaemia treatments to rule

his life, instead, he leads his life around

the treatments. The blood transfusions,

hospital visits and treatments required to

maintain his health have never been a

hindrance to how he lives his life. Mike

even travelled to Thailand and stayed for

a month there nine years ago. He had a

“full to the rim” blood transfusion just

before and right after the trip, and toured

the sights with disposable infusion sets

(balloons) attached for many hours a day.

At the Cyprus workshop, he presented

the objectives and roles UKTS played. As

Professor Bernadette Modell mentioned in

her speech during the opening ceremony

of TIF’s 2001 Conference, UKTS was

one of the world’s pioneer societies for

Thalassaemia. It funded the prototype of

the world’s first portable infusion pump,

and it also funded the research for oral

chelation, amongst many other ground-

breaking treatments for Thalassaemia.

One of the many friends I made at the

2003 conference in Palermo, Sicily, was

Costas Kountourou of UKTS. I remember

him constantly amongst Thalassaemics

from developing countries. He would

distribute donated Desferal-filled disposable

infusion sets (balloons) and ‘thumb-tacks’,

patiently explaining the functions and

usage, and guiding the patients into doing

the injections properly. Some of them

were so overloaded with iron that even

walking was painful. They did not have

proper education about treatments, even

Desferal was a luxury item to them and it

could be ages before treatments in their

countries are able to match those available

in the UK. But for those two days at the

workshop, they had a glimpse of hope.

Upon returning from Palermo, the

Committee and Sub-committee members

of the UKTS braced themselves to the

task of putting their 2003 UK Conference

together. Meeting once every week after

work, there were times when it was easier

to just call in pleading unable to attend.

They don’t get paid for their efforts, only

reimbursements for expenses incurred

related to the projects backed by receipts.

The amount of time spent travelling to

and from Nottingham to check the hotel

and its facilities. The communications with

guest speakers to ensure their attendance

and that their abstracts arrived in time for

putting together in the folders. The visits

to hospitals to make sure the posters were

being put up. The hunt for a reasonably

priced and fast turnaround printing

company. The nights of putting all the

material together in the conference bag.

Everything was being executed by the

small, tight team of about 10 volunteers

and one and a half paid employees. I am

amazed at the attitude of the handful of

volunteers. It’s a thankless job, putting

together something of this magnitude

which involved so much of their free

time, when they could have been out

doing other things to keep themselves

entertained, or just resting at home.

They do not behave the way the

Thalassaemics in my country do. I felt as

if I was amongst my peers or directors

in the office where I work when we are

organising an event. They brain-stormed,

gave ideas, argued and worked things

out. Thanks to the UKTS, the healthcare

for Thalassaemics in UK is one of the

best in the world. I’ve heard praises being

sung from fellow Thalassaemics and their

parents who have the resources to travel

to London for a consultation with the

specialists or a visit to the Thalassaemia

Units here.

UKTS was formed in 1976 by a

group of parents with the objective of a

Thalassaemia-free future for their affected

children. In the years that have passed,

their children have grown up, and though

they still have Thalassaemia, long gone are

the days of uncertainty. Almost all UKTS

committee members are Thalassaemics

themselves, having blood transfusions,

Thalassaemia Matters ...continuing the fight against Thalassaemia 17

patient news

nightly Desferal injections, daily drug

supplements and scheduled check-ups

as part of a routine. Today, they look at

Thalassaemia as a condition, just as some

people have sensitive skin or allergies.

They have gone through the normal

growth process just like everyone else,

and are individuals with mature mindsets.

Around the conference table they decide

whether or not to; fund research proposals

from professionals, answer requests

for assistance, release related medical

information, meet with hospital personnel

to improve Thalassaemia treatments and

organize awareness campaigns.

A parent myself, I was used to taking

charge, deciding what’s good or bad for

Valerie. As she grows older, I’ve learnt

to let her take over the responsibilities

of her treatment. If she delays her

blood transfusion, she will suffer the

consequences of anaemia which will

hinder her active lifestyle. If she skips

her Desferal injections, she will feel the

impact of overloaded iron in her body.

Thalassaemics have a very strong life force.

The more I expose Valerie to the world, the

stronger will to survive she develops. I can

see Valerie growing into an independent

adult, capable of making decisions, just like

any other adults we meet in our everyday

lives.

The forefathers (and mothers) of UKTS

have worked hard to make sure that their

children grow just as I do. Now is the time

to let our children to take over the rein.

We may not agree with everything our

children do, but it’s their time now. They

have survived researches being guinea pigs

themselves. They are more involved in the

treatments than we can ever imagine as

parents. They have experienced successes

and failures. They know what they want.

We should have faith in them to take

Thalassaemia to another level where we

have not been before, knowing it’s only for

the best.

patient news

My name is Michael, I am a 27 year old

Thalassaemia patient from Bristol. I thought

I would write some information on my

experience with Thalassaemia.

I’m not too sure exactly what to write

but hopefully any information I do will be

of some use.

I was diagnosed with the condition at

around 13months old when my parents

took me to the doctors as I had been ill

for a few months. I am now 27yrs old and

you can probably imagine that 26 yrs ago

the knowledge of Thalassaemia wasn’t too

great.

The medical advances made over the

years have been really significant and the

standard of treatment that patients receive

nowadays is first class.

I have always been positive in connection

with receiving my treatment and now think

nothing of it when visiting the hospital for

blood transfusions. I like to think of it as a

day off work!

The frequency of my visits to the

Children’s ward of Bristol’s Southmead

hospital varied from anything between 3

wkly to 6 wkly depending on haemoglobin

levels.

During my school years I would

sometimes stay overnight, as long as I

survived the hospital dinners!, then go to

school the next morning. I know it was

probably hard for my parents to have to

take me to the hospital all the time and

sometimes have to leave me there for

treatment but I’m sure they look back at

it now and fully understand it was for the

best, sometimes they would be able to stay

the night with me which would kind of

ease the stress.

I don’t know much about bone marrow

transplant procedures nowadays but by

the time it was mentioned to my family I

had been given alot of blood transfusions

and the risk was not thought worthwhile.

I know it would have been a chance at life

without Thalassaemia and all it in tails but

I know that having this disorder has made

me strong and made me the person I am

today.

As I got older and received more

transfusions I needed additional treatment

to overcome the excess iron I was receiving

from the blood. This was done by way of

desferal injections at home during the night

over an 8-10 hr period. I currently do this

for 5 nights a week but it varies dependent

how much iron is in the body. I remember

my mum practicing with a butterfly needle

on an orange in the early years as she was

the lucky one who had to administer it for

me. When I was old enough to do it myself

I was obviously scared but the more I had

to do it the easier it became. As long as

you are disciplined with this aspect of the

treatment, it can only help in keeping a

low iron/ferritin level, major problems with

hopefully be avoided. Remember the pump

is your friend.

I have coped quite well with the blood

transfusion sessions at the hospital and

also with the nightly injections, I put this

down to the great loving support of my

family and friends, including all the doctors

and nurses and associated staff I have met

during my time and from my girlfriend over

the last 4 yrs.

However I do remember a couple of

instances when it could be quite depressing

if I thought about it too much. Mainly

thinking why me? Why do I have to do

these injections all the time? Why couldn’t

it be someone else or not exist at all? But I

also used to think that there are alot worse

things that can happen to people and that I

had to be brave and get on with life.

Of course the waiting around in

outpatients for hours to see a doctor can

be boring and tiresome but it is good to

Continues on page 18 ➡

A patient’s experience

www.ukts.org18

patient news

Employment and Career Mattersby Neelam Thapar(Neelam is a Careers Adviser at London Metropolitan University and also a thalassaemia major patient at Whittington Hospital, London)

In this issue, we will look at how to deal

with interviews for potential jobs. Most

people start to feel very nervous before

approaching any interview. However,

remember that an interview is a two

way process and the interviewer may

also be just as nervous as you!!

Please don’t hesitate to contact

me if there are any particular careers

questions you have. All correspondence

can be sent via the UKTS office or by

email to office@ukts.org.

InterviewsDepending on the company to which you

are applying, you can expect at least one

interview, maybe more. You may even be

invited to attend an assessment centre.

Being interviewed for a job need not be

fraught with difficulty. There are some basic

skills you can learn. Remember though, to

have got as far as the interview, you will

have submitted a sufficiently impressive

application (form or CV) to make the

employer want to more about you.

As with every stage of job applications,

preparation is the key.

• Make sure you have researched the

company as thoroughly as possible,

using the internet, financial press,

company reports and recruitment

literature.

• Remind yourself why you applied. What

makes you want to do this particular job

for this particular company?

• Look at the copy of the application

form or CV and cover letter that you

completed to see what you have told

them.

• Think of the skills, knowledge

and interests you can bring to the

organisation. Look at the person

specification that the firm may have

provided and think of additional

examples from your own experience to

demonstrate each competency (skill) that

the employer is looking for.

• Prepare appropriate questions to ask.

Always dress neatly and smartly, and

avoid excessive jewellery and make-up. First

impressions count, so make an effort.

First impressions are very important. An

interview may well continue for 30 minutes

or more, but studies have shown that

someone forms judgements about you

within four minutes of your meeting and that

these judgements inform their subsequent

impressions. Research shows that the first

impression is made up as follows:

• 55% visual impact i.e. dress, facial

expressions and other body language;

• 38% tone of voice;

• 7% from what you say

(www.prospects.ac.uk)

Ensure that you know where the

interview is, and work out your route in

advance. Always give yourself plenty of

time, to allow for mishaps and to give

yourself time to collect your thoughts.

When you arrive, be polite and courteous

to everyone you meet, from reception staff

to the interview panel. Smile! Look friendly

see a doctor and discuss test results and

also any concerns you may have.

The UK Thalassaemia society have also

been great in their support and also for all

their on going hardwork and effort.

The annual conference/work is a great

place to meet other people in the same

situation and also learn new things

about Thalassaemia. I highly recommend

attending one.

When I finished school I went onto

college to study Travel & Tourism and then

after my 2 year course I went into work at

a travel agency. I worked there for 4 years

before taking 5 months off to visit family in

Cyprus and spend a month in Germany.

My pump is well travelled and has been

many places with me, it is never a problem

taking it on holiday and it does not restrict

anything I want to do. I’ve now been

working in the head office of a bank for

4 years and have recently passed some

mortgage qualifications which will hopefully

lead to a better position.

My main passion is football and

particularly Tottenham Hotspur football club

and I travel up to North London as often

as possible to see them play. It’s normally

a 6 hour round trip but is worth every

minute. I have been with my girlfriend for

4 and half years now and I could not be

with a more kind and caring person. She

is currently finishing a degree at university

and I am so proud of her.

I decided to tell her about Thalassaemia

after a few months into our relationship as

there is no point hiding it. She obviously

had alot of questions to begin with and

still does now when we visit the consultant

at the hospital but she gave me extra

support when needed. As far as giving

you anymore information goes I’m not

sure what else to write, but I believe that

anybody with Thalassaemia needs to be

brave and strong and this will help them

get through life and enjoy every bit of it.

I hope this has been of some help and all

the best. Michael Paraskeva.

Continues from page 17

Thalassaemia Matters ...continuing the fight against Thalassaemia 19

patient news

and try to appear relaxed. Body language

is important and can have quite a big

influence on how the interview progresses.

Golden Rules for Answering Questions.• Always be positive. Even when things

have gone badly for you, try to think

positively about what you have learnt

from the experience.

• Never offer negative information about

yourself or anyone else.

• While replying to questions, make eye

contact with the interview panel. Do

not just talk to the person who asks

the questions or who appears most

sympathetic.

• Don’t pretend to know something if

you don’t, or to answer a question you

haven’t understood. If you are not sure

what the interviewer means, ask for

clarification.

• Speak clearly and distinctly. Try to slow

down, and don’t rush your answers.

• Try to avoid excessive hand gestures and

other physical mannerisms.

• Do not make vague statements, as

the interviewer will pin you down. Be

prepared to elaborate on your replies.

• Anticipate questions and have answers

prepared. Run through a mock interview

with someone you trust.

There are some typical questions that are

likely to come up. These may include:

Knowledge of the vacancy. For example:

what do you know about.....? What do you

understand by.....? What qualities or skills

do you have which make you a suitable

candidate? Why do you think you would

make a good......? What experience do you

have that is relevant to this position? What

can you bring to the organisation?

Knowledge of the organisation. What

do you know about our business? Why did

you decide to apply to us? Who do you see

as our major competitors? What do you

consider to be the main difficulties facing

our management?

Career motivation and direction. Why

have you applied for this kind of work?

What do you see yourself doing in 5 years

time? How mobile are you? What do you

want out of a career?

You may be asked about difficult

areas such if your exam results were

disappointing, what contributed to this

? Why are there gaps in your CV? Why

did you retake your second year of your

degree? Have positive answers ready, and

always focus on what you have learnt from

negative experiences.

An interview is a two way process.

It should be conversational rather than

an interrogation, and the interviewer

should not be in the position of dragging

information out of you. Try to give coherent

and concise answers, and avoid simply

saying ‘yes’ or ‘no’. This is your chance to

convince the interviewer that you have

the right qualifications, skills, experience,

motivation and personality for the job, so

believe in yourself.

Remember that the interviewer does

want to appoint someone for the position

as it costs the company time and money

to keep interviewing - this is your chance

to impress. Also remember that the

interviewer may be testing you against the

competencies mentioned in the person

specification - remember even if you being

interviewed by someone you know to give

full descriptive answers - do not assume

that the interviewer will know what you

have being doing.

You will be asked if you have any

questions. It is useful to have questions

prepared before hand. However, if you

feel everything has been covered in the

interview, it is perfectly acceptable to say

that your questions have been answered

during the course of the conversation.

If you do have questions, make sure

they relate to the job, the firm, its’ training,

career structure and market. Do not ask

about information that is freely available in

the company literature and preferably do

not ask about holiday and benefits.

If you have disclosed about Thalassaemia

in your application form (you may not

have done so), do not assume that the

interviewer or interview panel will have

all the details. Quite often, the medical

part of the form is kept by the Personnel

Department and the interview panel is

only informed that the candidate has

ticked the disability or health condition

section. Be prepared to be positive and

not to give a medical explanation full of

complicated terminology. If you need to

give any information, show how having

Thalassaemia has helped you to have

excellent time management skills or how

you have been able to combine having your

treatment and studying or working.

Once you have left the interview, you

could make notes for yourself. Was there

anything you were not expecting? Was

there anything you should have covered in

your research but didn’t? What questions

were you asked? Which questions did you

find difficult, and why?

Your interviewer will usually indicate when

you will learn the result of the interview.

Many organisations operate a 2-stage

selection process with second interviews and

an assessment centre. However for some

jobs there will only be one interview before

a final decision is make.

If you are successful, you will need

to know about salary, start date, leave

entitlement etc before you sign any

contract. If you are not successful, you

can try and get some feedback on your

performance from the Chair of the

interview panel.

You may have been to several interviews

and have a choice which position you wish

to accept. Consider the advantages and

disadvantages of each job and company.

Discuss this with someone who can help

facilitate your decision.

Be positive and believe in yourself

© London Metropolitan University Career

Development and Employment Service

patient news

www.ukts.org20

news from around the world

This is a dedication to a wonderful person

and friend who recently lost his fight

against thalassaemia. Ralph Cazzetta was

a son, a brother, an uncle, a nurse and

a friend. He was always meeting new

people, was involved in thalassaemia and

helped fellow patients and parents. Ralph

did it with compassion, determination,

passion and yes, with humour.

The first time I met patients from the

United Kingdom was during my first TIF

conference held in Cyprus back in 1993.

There were 34 Americans travelling

together. They were a great group of

individuals whom “happen to have

thalassaemia” and Ralph was one of

them. Not only was I fortunate enough

to meet some amazing people from all

over the world but also people who I

have the privilege to call my friends today.

Most importantly, I got to know my fellow

Americans better. Ralph stood out on this

trip as he always did wherever he went or

whatever he did. Everyone knew Ralph and

Ralph knew everyone.

Many of you may be puzzled by the

title of this dedication to our friend Ralph.

Ralph always made us laugh and I will

always remember him for his silliness and

sense of humour. In Cyprus a patient from

the UK was about to become a daddy

and was frantically waiting for the call

with the blessed news. One day, in the

middle of the conference, Ralph had a

page sent as a joke stating the person

had an important phone call. I never saw

anyone run to the phone so fast as the

soon-to-be daddy did. Lucky for Ralph, he

also had a sense of humour but the UK

patient vowed revenge! Three years later

the TIF conference was held in London.

In the middle of a presentation from a

prominent doctor, an overhead was placed

on the large screen behind the presenter

with the words “Telephone Call for Ralph”.

Everyone who was in Cyprus and knew of

the revenge laughed out loud, interrupting

the presentation and the conference. The

doctor and the rest of the audience were

confused. At every TIF conference since

then, someone mentions these words.

They are words of endearment to a funny,

friendly and lovable guy.

Ralph Cazzetta also had a serious

side, especially regarding the fight

against thalassaemia. He was one of

the five founders of the USA patient

support group, the Thalassaemia Action

Group (TAG), a board member of the

Cooley’s Anemia Foundation and one of

the first patient representatives on the

board of the Thalassaemia International

Federation. He was also the first Director

for Patient Services at the Cooley’s Anemia

Foundation, where he assisted patients

and their families with a variety of issues

and concerns. Ralph did this very well, not

only because he was a patient himself and

understood their struggles and concerns

but also because he was able to do this

with compassion, understanding and

caring for others. He extended these traits

to help others by accomplishing his dream

of becoming an ICU nurse.

Ralph will always be remembered for his

caring nature and sense of humour. Thank

you for touching the lives of those who

were fortunate in knowing you. Your call

will be in our hearts..........always.

Dawn Adler, USA

OBITUARY

Phone call for Ralph

4th International Conference In BrazilTo coincide with International Thalassaemia

Day May the 8th, ABRASTA (the Brazilian

Association of Thalassaemia) held their

fourth international conference from

30.4.04 – 2.5.04 at the Costa do Sauipe

resort. The aim of the conference was

to update all physicians involved in

thalassaemia treatment in Brazil; and, in

particular, to focus on the diagnosis and

treatment of cardiac complications. Guest

presenters included; Dr Beatrix Wonke

(Health care for thalassaemic patients), Dr

John Wood (Pathophysiology of iron in the

myocardium), Dr Renzo Galanello (Treating

iron overload myocardiopathies), Dr Nelson

Hamerschlak (MRI cardiac iron assessment)

and Dr Sandra Almeida (Psychosocial

aspects of thalassaemia). Dr Wonke, Dr

Wood, Dr Galanello and Dr Fernando

Tricta jointly presented a proposal for

individualized chelation therapy based on

the T2* (MRI).

Thalassaemia Matters ...continuing the fight against Thalassaemia 21

news from around the world events

Congratulations to Michael and AggieWe are sure all our readers will join us in congratulating our President Mike Michael and his bride Aggie Tan, who were married on 12th June at Enfield Registry Office, North London

THE UK THALASSAEMIA

SOCIETY ANNUAL DINNER

& DANCE

will be held on

Saturday 27th November 2004

at

The Brewery Chiswell Street

London EC1Y 4SD

TICKETS £40 Available from the

UKTS office

N.B. For security reasons all tickets must be paid for in

advance.No places will be reserved unless payment has been

received.

UKTS at the Cyprus Wine Festival

The 2004 Cyprus Wine Festival was held at

Alexandra Palace on 26th-27th June 2004

and UKTS were out in force. Our stand

was manned throughout the two days

and we gave out leaflets and spoke to

hundreds of people on the importance of

blood screening for thalassaemia carriers.

We also held a raffle which raised £900 in

aid of Thalassaemia and we would like to

express our gratitude to HELIOS AIRWAYS

who kindly donated the prize of an airline

ticket to Cyprus. Our heartfelt thanks

to the many volunteers who assisted us

throughout the weekend.

www.ukts.org22

events

May 2nd (Bank Holiday Sunday) saw the

second “Greek Night” organised by a few

of our talented socialites (Maria Gavriel,

Olga Demetriou & Angelica Gavriel).

This year’s venue was the swanky KO

Club in Wood Green. After weeks of

organising, phone calls and flyer mail outs

by the ladies, this year’s club night was

another overwhelming success!

Special guest DJ Polis Polycarpou (LGR

Radio) with resident DJ Mikey Mike wooed

the crowd with their mixing of old and

new Greek tunes as well as adding in some

up to the minute UK chart toppers.

Many volunteers helped on the night at

the ticket booth and ensured the smooth

entry for the streams of enthusiastic

punters. However by 1am their services

were no longer needed as the club was at

capacity and there was no more room on

the already packed dance floor!

The crowd had a fabulous night, so

much so that KO management have

invited the organisers to hold another

‘club night’. A date has not yet been

confirmed however for those of you who

unfortunately missed out this time round

or who are looking forward to coming

to another be sure that we will keep you

posted on the next big ‘Greek Night’ out.

The UKTS would like to thank the

organisers above, volunteers and all those

who attended in raising over £3,700 on

the night.

Greek NightGreek Night

This year’s Flora London Marathon was

held on 18th April. We would like to thank

and congratulate our stalwart runners,

who performed brilliantly in spite of less-

than-perfect weather conditions. They are

(in alphabetical order)

Mrs Jackie Bevan

Mr Martyn Bevan

Mr Geoff Burrows

Dr Stephen Cray

Mr Darren Evans

Ms Amanda Fetti

Mr Tadgh Flanagan

Mr Richard Seabrook

So far almost £5,000 has been raised in

support of thalassaemia and some of the

runners are still collecting. We are more

than grateful to them, not only for their

performance on the day but for all the

long, hard hours of training and equally

long, hard hours of finding sponsors and

collecting the money! It is not an easy

task to find people to donate money to

a cause that few of them have heard of,

as we at UKTS are only too well aware.

Many thanks to the runners from all our

members.

Congratulations to our Marathon runners

Thalassaemia Matters ...continuing the fight against Thalassaemia 23

events office news

Changes in the UKTS OfficeAs our regular readers will be aware our

long-standing Co-ordinator Costas Paul

retired in December 2003. His assistant

Elaine Miller has now been promoted

to Co-ordinator and we are pleased to

welcome new part-time staff member Pat

Hayward who will assist Elaine in running

the office. Congratulations to both the

ladies on their new positions and thank

you for your continued hard work and

dedication!

The UKTS Personal Organiser

GIVE US YOURGOOD NEWS

Are you a thalssaemia patient (or a

parent) who has some good news to

tell us? At UKTS we are always keen to

hear of any achievements and success

stories from our patient members and

we are therefore thinking of including

a new “Congratulations” feature in

Thalassaemia Matters. The good news

can be anything at all, as all success is

relative and what would be routine for

one person can be a great achievement

for another! So please ask yourself if there

is anything you would like to share with

our readers – every achievement we can

print will be a source of encouragement

to other thalassaemia patients and their

families. Accompanying photographs

will also be very welcome.

Many thanks – we look forward to hearing from you.

Dept of Health Hepatitis C

Payment Scheme– Applications Now

Being Processed With Effect From 5th July 2004

The government have established an

ex-gratia payment scheme for those

infected with Hepatitis C by NHS blood

transfusions. Details were published

in the April issue of Thalassaemia

Matters. If anyone would like a copy

of the article please contact the UKTS

office.

If you think you may be eligible to

claim you should register your interest

with the Dept of Health. You can do

this by telephoning 020 7210 4850 or

by email to dhmail@doh.gsi.gov.uk

Our most grateful thanks to all our donors

for their generosity.

Mr S Gandhi £250

Laiki Bank £100

Ms M Conboy £5

A V Holligan £56

Mrs A Katsouris £50

Mrs C Hancock £10

Dr A K Adak £20

Dr S Bannerjee £101

Mrs N Rehman £10

Mrs E Leonida £240

Dr & Mrs A Tsikoudas £210

(in memory of their daughter Theodora)

Donations

The Editorial Committee reserves the

right to alter any articles for publication

where necessary and accept and

reproduce or copy on good faith.

Neither the Editorial Committee or the

Society accept any responsibility for any

inaccuracies or omissions.

The views expressed are not necessarily

that of the Society.

UKTS Welcomes NEW-MEMBERS

AnnualMr A Anastasi

Ms M LjungbergMr R Ensan

Mr M SiderasMrs M MaraniMr T Erdinch

Dr G GeorgievMr E Moustafa

LifeMr T S Wong

Mr M Nawwab

• Are you a thalassaemia patient/

parent of a thalassaemic child?

• Do you have the UKTS specially

designed personal organiser for

thalassaemia patients?

If not why not – all it takes is a call to our

office.

This valuable aid to keeping your own

patient – held medical record is FREE to

patients and parents/carers of children with

thalassaemia.

Call 0208 882 0011 to order your copy now!

www.ukts.org

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Desi

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. Tel

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membership application form

UK Thalassaemia Society, 19 The Broadway, London N14 6PHCharity Reg No. 275107

Your Personal Details

ALL DETAILS AND INFORMATION WILL BE KEPT ON OUR COMPUTERS AND WILL REMAIN IN THE OFFICE AND WILL NOT BE MADE AVAILABLE TO ANYBODY OUTSIDE OF THE UKTS.

If you however do not wish your details kept on our computers please tick this box

OFFICE USE: Date Paid Receipt No. Approval Date

Title (Mr/Mrs/Miss/Ms/Other):

First Name(s):

Surname:

If you are a patient or parent of a patient please complete the section below

Patient’s Name(s):

Hospital where-treated:

Address:

Date of Birth

Consultant’s Name:

Consultant’s Telephone:

GP’s Name:

Address:

Telephone:

Transfusion Frequency:

Units received at each transfusion

Blood Type

Type of thalassaemia: (e.g. Major, Intermedia, Haemoglobin H etc)

Sex: Male Female

Address:

Contact Details

Telephone: Home:

Work:

Mobile:

Fax:

Email:

Are you a:

Patient Parent/Relative

Healthcare Professional Association

Other (Please state)

Membership Required (please tick)

ANNUAL (£10.00) LIFE (£100.00) (Please make your cheque payable to U.K.T. Society)

Blood Transfused (please tick)

Whole Washed Frozen Filtered

Chelation (please tick)

Desferal Deferiprone Desferal & Deferiprone

Post Code:

Occupation:

Ethnic Origin:(Optional)