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COBALAMIN NEWS
"I wanted to become an
Ambassador for the
Pernicious Anaemia Society,
because I've felt increasingly
frustrated and annoyed by
the 'under-diagnosis' of PA,
mis-diagnosis of symptoms
and the dissatisfaction of pa-
tients regarding their Vit B 12
treatment schedules.
I will endeavour to make a
difference here, although it
will be a slow process... but
slow progress is better than
no progress.”
Dr Chris Steele MBE
In this issue The patient’s perspective
10 year anniversary plans
Research news
Get togethers
Treatment updates
Volunteers needed
PASCOC Chair, Martyn Hooper presenting at the recent Parliamentary reception
Introducing our New Ambassador
We are delighted to announce that Dr Chris Steele MBE is now an Ambassador
for the Pernicious Anaemia Society (PASOC). Dr. Chris, a GP with over 35 years’
experience, has been the resident doctor on ITV's ‘This Morning’ daytime maga-
zine show since its launch in 1988.
After listening to PASOC Chairman Martyn Hooper present at Thyroid UK’s confer-
ence in October, Dr Chris later met with Martyn and offered to help in any way he
can. “I am delighted that Dr Chris has agreed to be an ambassador for the socie-
ty” says Martyn. “His reputation, experience and contacts will help the society
raise its profile not only amongst medical professionals but also to the general
public and media”.
Volume 2 Issue 4 May 2015
Know a group of medical professionals who would be interested in finding
out how the new guidelines affect patients? Contact the society and we can
make arrangements to deliver the presentation.
The patient’s perspective A new presentation produced by the society puts across the patients’ perspective
on the new Guidelines on Cobalamin and Folate that were produced by the British
Committee for Standards in Haematology (BCSH).
Aimed at medical professionals, the presentation utilises the findings from the
society’s survey of members published in April 2014 to illustrate how the problems
with the diagnosis of B12 Deficiency that are addressed in the new guidelines have
an impact on patients getting a quick and accurate diagnosis.
While the new guidelines acknowledge the failings of the current test to determine
the B12 status of patients and the inadequacy of the test for intrinsic factor antibod-
ies it is this society that knows how these failings affect our members.
© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839
New treatments
New treatments for B12 Deficiency have been developed in response to patient
demand. However, these are not available on the NHS which still relies on injec-
tions to correct any deficiency caused by Pernicious Anaemia and the new Guide-
lines favour this form of treatment to others.
Other treatments available at health stores and elsewhere include sub-lingual
sprays, sub-lingual lozenges, nasal sprays, skin patches and high potency tablets.
If you are experiencing a return of your symptoms before your next injection is due
but your doctor refuses to increase the frequency of your injections you may want
to discuss using these different delivery methods with your doctor to supplement
your injections.
The best way to do this is to purchase your preferred method of supplementation
and take this along to the next appointment you have with your doctor so that he
or she is fully aware of what you are considering doing. The efficacy of these
treatments has not been fully evaluated but many members report that they do
help them manage their condition better but be sure to discuss this with your doc-
tor before you start any supplementation.
Research update Jab frequency
The research team that is looking
into why some patients need much
more frequent injections than others
have finally received medical ethics
approval and the programme is
about to begin. Members who have
already registered to take part in
the programme need do no more.
Your details have been sent to the
team and we will contact you if you
are selected to take part in the re-
search.
Fine on 12-weekly jabs?
We need to hear from you!
If you do not experience a return of
any symptoms before your next 12
weekly injection is given please
register for the programme.
Simply go to the link on the homep-
age of the website—if you haven’t
already! The more participants that
are registered the more choice the
research team will have.
How are you feeling?
Dr Heidi Seage of Cardiff Metropoli-
tan University would like to know
how Pernicious Anaemia is affect-
ing your wellbeing. Complete her
short questionnaire you can access
via the members’ area of our web-
site.
Help us help you: Research projects are a vital way of improving the way Pernicious Anaemia is diagnosed and treated. Visit the website to find out more
Fundraising for research driving improved testing and treatment for PA sufferers
© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839
On no account should you stop receiving your injections
The Thames Path Challenge Thank you to Jessica Sandi who will be taking part in The Thames Path Challenge on 12/13 September. We are very grateful to Jessica for doing this. We are still run purely by volunteers and with a constantly growing membersip, funds have be-come more and more important, not only to keep the basic website run-ning, meetings, telephone and email support service, etc but also to help fund research and campaign for better treatment and diagnosis. It would be fantastic if anyone wanted to show their support in the way of donations to Jessica. See what Jessica is doing here and donate.
Competition winner
Congratulations and thank you to
Maggie Marley, winner of the T-
shirt design competition we ran
at the end of last year.
We are currently getting t-shirts
with Maggie’s design made up
and will let you know when they
are available for you to buy.
Time for a coffee?
Let’s get together
Coffee Morning, Birmingham—Sat, 30 May at 10:30am
Lounge of the Macdonald Burlington Hotel, Burlington Arcade, 126 New Street,
Birmingham B2 4JQ. Free to attend. Friends and family members welcome.
Come and meet the Chair of PASOC, Martyn Hooper as well as fellow sufferers.
Share experiences, coping strategies and other information in an informal setting.
It is often only when patients talk to other patients that they feel that someone
really understands just what it is like to have Pernicious Anaemia.
Plan to attend? Please drop us a line at [email protected] to let us know.
Open Office Saturdays
Want to visit to the society’s Bridgend office’s to talk to some of our volunteers
who do such a good job in dealing with the everyday tasks of running the society?
Perhaps you would like to talk in person with Martyn, the Chairman of the society
or simply find out more of what we do?
We know some people can’t get time off in the week so we are introducing
Open Office Saturdays on an on-demand basis. If you would like to come along to
the office for a chat or just a look around, we will open the office on any Saturday
morning for you to visit. You can bring anyone else along with you – you could
even organise trip with other members from your area.
Want to visit? Just drop us a line at [email protected] with a few weeks’ notice
and let us know how many are coming so that we have enough tea and coffee!
© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839
Independent support groups
Three new independent
support groups that have
been set up by members:
Frank—Leicestershire
leicester-
Worcestershire worcester-
Anabelle—Isle of Man
Save the dates
Pernicious Anaemia Week 2015 will run
from 19 – 25 October, with Pernicious
Anaemia Day falling on Wednesday, 21
October.
We plan to hold a meeting for members
to attend on Saturday 24th October so
save the date.
More detail will follow in the next issue
of Cobalamin News.
About us
The Pernicious Anaemia Society was formed in 2006. It is based in Bridgend, south Wales in the UK. It is a registered charity (No. 1147839) and is a limited liability company (Reg. no. 07904047). Overall responsibility for the so-ciety rests with eight trustees. The society is run entirely by volunteers. Day to day decisions are made by the Executive Chairman. The Pernicious Anaemia Soci-ety, Level Four, Brackla House, BRIDGEND, Wales, CF31 1BZ UK Tel: +44(0)1656 769717 Main Contacts Executive Chairman
Martyn Hooper
Secretary
Michael Stevenson
Treasurer
David Connell-Smith
Membership secretary
Carrie-Anne Carr
Communications
Louise Jones
Please contact us for details of
overseas delegates.
Email: [email protected]
Website:
Test developments
There have been two major new developments in the tests used to determine
B12 status in patients and whether any deficiency is caused by Pernicious Anae-
mia.
Improving accuracy
It is generally acknowledged that the current test that is used, the Competitive
Binding Luminescence Assay (CBLA), is seriously flawed and gives false high
results in up to 35% of cases. Methylmalonic Acid and Homocysteine are perhaps
better indicators of any deficiency.
A recently published paper shows how, using some very complex mathematics,
it is possible to work out what the patient’s MMA and Homocysteine levels will be.
The maths involved is quite daunting even to those with a background in the sub-
ject, however, it does means that somebody is acknowledging the current issues
and trying to reach a solution.
A major leap forwards
We attended a presentation about another recently developed new test that
shows much more promise. We cannot say too much about this new test but it is
a major leap forward and incorporates the Active B12 test along with three other
tests.
And the amazing thing is that it only needs one drop of blood for analysis. The
plan is that the new machine, currently the size of a table, will be available as a
hand-held device for doctors.
10-year anniversary plans Next year, 2016, we will be celebrating ten years of being a registered charity.
Although the society began in 2004 as an online forum, it was only in July 2006
that it became a registered charity. Four of the original Trustees remain out of a
total of nine.
To celebrate our ‘Tin’ anniversary we will be hosting a conference in June of
2016 where a number of presentations will be made over the course of the day.
We are still finalising details but it will most likely be held in Birmingham which is
central for most people. More details of this, as well as a fundraising initiative to
help the society move forward in the next 10 years, will be announced soon.
© The Pernicious Anaemia Society 2015. Reg. Charity No. 1147839
Volunteers needed
Are you an experienced corporate fundraiser or skilled at database analysis? We want to ensure the society is ‘Fit for the Future’ and need your help. If you can spare even just a little time please call for a chat to see how you can make a differ-ence.
Got other skills you think can help the society? We’d love to hear from you too!