www.irishheart.ie

CARDIOMYOPATHYSUPPORTGROUP IRELAND

This is a voluntary group of people, all ofwhom have cardiomyopathy. It was set up inassociation with the Irish Heart Foundation tohelp people with cardiomyopathy and theirfamilies, by providing information andsupport. The support group also aims tocreate better awareness of the condition inIreland so that more people get the help theyneed.

Understanding your condition is importantand members receive information bulletinsand invites to information meetings. If youwould like to get in touch with other membersor sign up to our mailing list you can contactus through the Irish Heart Foundation’sNational Heart and Stroke Helpline on 1890432 787 or email info@irishheart.ie .

Cardiomyopathy Support Group

The support group aims to create better awareness ofcardiomyopathy inIreland so that morepeople get the help

they need.

1

What is Cardiomyopathy?Cardiomyopathy is a disease of the heartmuscle. In many cases it is an inheritedcondition, caused by a genetic abnormality,and several family members can be affected.Most people with cardiomyopathy have agood quality of life and a normal lifeexpectancy. However, some peopleexperience severe symptoms and are at risk ofserious heart rhythm problems and suddencardiac death. Treatment with medicines anddevices such as pacemakers and ICDs, canimprove and stabilise symptoms for manypeople.

There are four main types ofcardiomyopathy:

• Dilated cardiomyopathy (DCM)

• Hypertrophic cardiomyopathy (HCM)

• Restrictive cardiomyopathy (RCM)

• Arrhythmogenic right ventricularcardiomyopathy (ARVC)

Other types of cardiomyopathy includeischaemic cardiomyopathy due to a heartattack. A severe viral infection, long standinghigh blood pressure, heart valve disease andcertain drugs, such as too much alcohol canalso cause a cardiomyopathy.

2

Dilated CardiomyopathyDilated cardiomyopathy (DCM) is a conditionwhere your heart muscle has stretched(enlarged) and become weak. When thishappens your heart can’t pump blood aroundyour body as well as normal. This causes fluidto build-up in your lungs and in other parts ofyour body, usually in your legs and ankles,liver and abdomen. The extra fluid in yourlungs can make you feel breathless. This iscalled heart failure. Symptoms of DCMinclude: breathlessness and tiredness, swollenankles or abdomen and sometimespalpitations.

There are a number of reasons why a personmay develop DCM. There is a genetic link andit has been found that about 1 in every 3people with the condition has relatives withDCM. Other reasons include: • viral infections• pregnancy• alcohol abuse• some medicines such as the anti-cancer

medicines, anthracyclines.

In all of these cases, it is not known if theinfection, substance or pregnancy alonecauses the disease or if people affected,already have a genetic pre-disposition todevelop cardiomyopathy.

Types of Cardiomyopathy

3

Hypertrophic CardiomyopathyHypertrophic cardiomyopathy (HCM) is agenetic condition where there is an increasedthickening of your heart muscle. It is alsoknown as hypertrophic obstructivecardiomyopathy (HOCM). The abnormallythick heart muscle is stiffer than normal andaffects your heart’s ability to pump bloodaround your body. Some people with HCMhave a risk of developing life-threateningheart rhythms (arrhythmias).

About 1 in 500 of the population has HCM.Even though the genetic abnormality ispresent from birth, HCM usually develops afterpuberty. Symptoms include: chest pain,breathlessness, palpitations, blackouts(fainting) or feeling light-headed.

Heart muscle can also thicken in people whodon’t have cardiomyopathy. This is because ofhigh blood pressure or intense athletictraining over a long period of time and is notan inherited condition. By examining thestructure of heart muscle tissue, doctors candetermine whether or not HCM is the cause ofthe thickening.

4

Restrictive Cardiomyopathy (RCM)This is a rare form of cardiomyopathy wherethe heart muscle becomes stiff, but notthickened. As a result the heart can’t fillproperly with blood and can’t pump bloodaround your body efficiently. In many cases,the cause of RCM is not known, although thereis some evidence that it may be caused by thesame genetic abnormalities as HCM. RCM hasalso been linked to some other rare heartdisorders and in some cases, develops afterradiation treatment for certain cancers.

Symptoms of RCM include: breathlessness andtiredness, swollen ankles or abdomen, heartrhythm problems and palpitations. Somepeople can have further complications such asblood clots.

Arrhythmogenic Right VentricularCardiomyopathy (ARVC)ARVC is a genetic condition, mostly affectingthe right ventricle. The proteins that holdheart muscle cells together have notdeveloped properly in people with ARVC.These proteins can’t hold the heart musclecells together, particularly when you areexercising and your heart is working harderthan usual. The cells break away and die. Thischanges the structure of your right heartmuscle, making it thinner and filled with morefatty and fibrous tissue than normal.

5

People with ARVC are at risk of developingserious arrhythmias and can also have reducedheart pumping function. These heart musclechanges can sometimes affect the leftventricle as well as the right. ARVC is aprogressive disease and symptoms tend to getworse overtime.

Symptoms include: arrhythmias (some ofwhich are life-threatening), light-headednessand fainting, palpitations and sometimesbreathlessness.

Family assessment for inheritedcardiomyopathyMore often than not, cardiomyopathy is agenetic condition. Because of this, if you havebeen diagnosed with cardiomyopathy it isimportant that you talk to your cardiologist orGP about assessing other family members forthe condition. It is important that all firstdegree relatives of a person withcardiomyopathy are medically assessed for thecondition, even if they don’t have symptoms.If you have cardiomyopathy, your first degreerelatives are your parents, children, brothersand sisters.

6

Assessment generally involves a

review of your family’smedical history, a

physical examinationand tests

7

Assessment generally involves a review ofyour family’s medical history, a physicalexamination and tests including an electro-cardiogram (ECG), an echocardiogram (Echo)and exercise stress tests. These tests look atthe electrical activity and structure of the heartat rest and during exercise, and are non-invasive. Most cases of cardiomyopathy canbe identified with these tests. Occasionallythere may be a need for further investigations,such as an electrophysiological (EP) study,magnetic resonance imaging (MRI), CT scan orangiogram.

Currently there are two Dublin-basedspecialist medical centres that providediagnostic services, treatment, genetic testinginformation and psychological support tofamilies with inherited heart conditions. Theyare located at the Adelaide and MeathHospital, Tallaght and the Mater Hospital, inDublin city. If you’ve been diagnosed withcardiomyopathy or any other inherited heartcondition, your GP can refer you to one ofthese centres.

For more information on family assessment forinherited cardiomyopathy, call the NationalHeart and Stroke Helpline on Locall 1890 432787 or email info@irishheart.ie.

8

9

AngiogramA test using dye and x-ray to see if you haveany problems in your arteries, valves or thechambers of your heart.

ArrhythmiaAbnormal heart beat. The heart may beat tooquickly, too slowly or in an irregular way.Arrhythmias that come from your heart’slower chambers (ventricles) can be life-threatening.

BlackoutA sudden loss of consciousness, alsocommonly called fainting or passing out.

CardiomyopathyA disease of the heart muscle which is ofteninherited.

CT scanThis test uses computer technology tocombine several different x-ray images toshow a 3-D image or cross-section of yourinternal organs.

EchocardiogramAn ultrasound examination of your heart tosee how well the heart muscle is working.

Medical Terms

Electrocardiogram (ECG)This test measures the rhythm and electricalactivity of your heart.

Electrophysiological (EP) studyA test designed to find and analyse abnormalheart rhythms.

Exercise stress testAn ECG carried out while you run or walk on atreadmill.

Heart failureA decrease in your heart’s ability to pumpblood around your body.

ICDA small device that’s placed in your chest. Ituses electrical pulses (shocks) to help controllife-threatening abnormal heart rhythms.

Inherited conditionsMedical problems that are passed throughfamilies and are caused by abnormalities inour genes.

Magnetic resonance imaging (MRI)A technique using magnetic fields, radiowaves and computer technology to producedetailed images of your body.

Medical Terms

10

PacemakerA small device that’s placed in your chest tomonitor and help control abnormal heartrhythms.

PalpitationsA feeling that your heart is beating too fast orskipping a beat. Sometimes palpitations are asymptom of an arrhythmia.

VentricleThe lower section or chamber of your heart.

Medical Terms

11

Please make a donation today

The Irish Heart Foundation is Ireland’s national charitydedicated to the reduction of death and disability fromheart disease and stroke. Over 90% of our funding comesfrom public and business donations. We depend on yourgoodwill and generosity to continue our work.

If you found this booklet useful, please help our charity to continue to provide heart and

stroke information by donating today.

You can make your donation today:By post: Irish Heart Foundation,

50 Ringsend Road, Dublin 4Online: www.irishheart.ieBy phone: 01 6685001

Personal Details

Name:

Address (required for direct debit) :

Email Address:

Phone:

Mobile:

Credit card/Laser (one off donation)

Amount:

€25 €50 €100 €250* Other €

Card Number:

Laser Only

Exp Date: / Security Code**:

Signature: Date: / /

The Irish Heart Foundation is committed to best practice in fundraising andadheres to the statement of guiding principles for fundraising

promoting transparency, honesty and accountability. Any personalinformation you provide will be held in accordance with the

Data Protection Acts 1988 and 2003. AP0

0248

Direct debit (monthly donation)Amount: €10 €15 €18 €21*

Other € per month

Bank Name:

Address:

Account Name:

Sort Code: Account No:

Signature: Date:

* If you are a PAYE tax payer, gifts of €250 in one year (€21 per month) could be worth up to an extra 70% to us at no extra cost to you.

** Last 3 digits on the signature strip on the reverse of your card.

Do you need a postal receipt: Yes No

I am happy to receive IHF communications by:

Email Phone Post

I would like to volunteer to help the Irish Heart Foundation

• This is a guarantee provided by your own Bank as a Member of the Direct Debit Scheme, in which Banks and Originators of Direct Debits participate.

• If you authorise payment by Direct Debit, then- Your Direct Debit Originator will notify you in advance of the

amounts to be debited to your account- Your Bank will accept and pay such debits, provided that your

account has sufficient available funds• If it is established that an unauthorised Direct Debit was charged

to your account, you are guaranteed an immediate refund by your Bank of the amount so charged where you notify your bank without undue delay on becoming aware of the unauthorised Direct Debit, and in any event no later than 13 months after the date of debiting of such Direct Debit to your account.

• You are entitled to request a refund of any Variable Direct Debit the amount of which exceeded what you could have reasonably expected, subject to you so requesting your Bank within a periodof 8 weeks from the date of debiting of such Direct Debit to your account.

• You can instruct your Bank to refuse a Direct Debit payment by writing in good time to your Bank.

• You can cancel the Direct Debit Instruction by writing in good time to your Bank.

(saves cost of postage)

OIN 306322

More information

Irish Heart Foundation50 Ringsend Road, Dublin 4Telephone: 01 6685001Email: info@irishheart.ie Web: www.irishheart.ie

National Heart and Stroke HelplineTelephone: Locall 1890 432 787Email: info@irishheart.ie

ICD Support GroupLong QT Syndrome Support GroupCardiomyopathy Support Groupc/o Irish Heart FoundationTelephone: 01 6685001 or Locall 1890 432 787Email: info@irishheart.ie

SADS Support Group (formerly, SCD in the Young Support Group)c/o Irish Heart FoundationTelephone: 01 6685001, Locall 1890 432 787 or 087 3232552Email: info@irishheart.ie

CRYP CentreAdelaide and Meath Hospital, Dublin 24Telephone: 01 4143058

Family Heart Screening ClinicMater Hospital, Dublin 7Telephone: 01 8034354Email: familyheartscreening@mater.ie

UK Cardiomyopathy Associationwww.cardiomyopathy.org

14

Irish Heart Foundation50 Ringsend Road, Dublin 4T: +353 1 6685001F: +353 1 6685896E: info@irishheart.ie

National Heart and Stroke HelplineLocall 1890 432 787Monday to Friday 10am to 5pm

Web: www.irishheart.iewww.stroke.ie

Funding:The Irish Heart Foundation is the national charityfighting heart disease and stroke and relies oncharitable donations for 90 per cent of itsfunding. We support, educate and train peopleto save lives, campaign for patients, promotepositive health strategies, support research andprovide vital public information. We need yoursupport – through donations, as a volunteer oron our training courses.

This publication is sponsored by BostonScientific.

Published by the Irish Heart Foundation in 2013. The information provided in thispublication was correct and accurate atthe time of publication to the best of thecharity’s knowledge.

Registered charity number CHY 5507