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Cardiomyopathy in the young

When children and young people are first diagnosed with cardiomyopathy, their families can be overwhelmed by uncertainty.

But having more information about the condition, best treatments and how children can live with the condition helps families adjust and deal more confidently with their situation.

So the Cardiomyopathy Association provides information and support to families in a number of ways:

For copies of any of the materials or for more information email Sarah Dennis at the CMA.

Cardiomyopathy in children and young people booklet

The A5 colour guide is for parents and carers of children with the condition and older children who are affected by it.

The 28-page booklet covers everything from diagnosis and treatment to growing up with the condition, school, sports, nutrition, immunisations, careers, holidays and lifestyle issues such as alcohol and drugs.

The publication, which is available free of charge, also looks at the effects on the family and latest research into the condition, and has a section on the most common questions asked by children and their parents.

The book has been written by cardiomyopathy experts at the Heart Hospital and Great Ormond Street Hospital in London.  It has been designed and produced by the CMA with funding from the Wates Foundation, an independent grant-making family trust dedicated to improving the quality of life of five to 25-year-olds.

To order a copy, email us giving your name and full address.

Hearty children's guide to cardiomyopathy

An eight-page reading book for affected children aged around eight, their siblings, friends and classmates.

It includes cartoons, easy to understand descriptions of the heart and how it works, what can sometimes go wrong and how doctors diagnose and treat cardiomyopathy.

The text has been developed with medical experts, including a child psychologist and children's cardiac nurses at Bristol Royal Hospital for Children and Great Ormond Street Hospital in London.

The books are being supplied free to hospitals and are also available to families direct from the CMA.

Hearty, a children's guide to cardiomyopathy, has been funded by the CMA's 2011 Christmas appeal.  Support also came from professional cartoonist Bob Gibbs, who donated the drawings, and his designer daughter Jo, who donated the artwork.

Printers Butler, Tanner and Dennis from Frome in Somerset provided 10,000 free copies.

To order copies, call the charity on 01494 791224 or email us.

Medical articles

Our quartlerly newsletter CMA News (sent to CMA members) contains many varied and interesting health articles relating to children and young people with cardiomyopathy. Please find below recent examples.  To read the articles just click on the relevant image below.  To receive a copy of CMA News, Join the CMA


   


Diagnosis

Telling children       

 Adjusting

        At home    





Taking medicine

       Eating         

  School

 Gene testing




 

Deciding on testing

Children's ICDs

 Support

Adolescence

 

 
 
 

Uncomfortable tests

Everyday illnesses
 Children's stories
 

Cardiomyopathy in children information days

The CMA holds cardiomyopathy in children information days. These days include presentations on cardiomyopathy in children, and issues such as medical management, current research, genetics and living with the condition. There is also a questions and answer session. The days are organised with the support of paediatric cardiac specialists at Great Ormond Street Hospital in London.   For more details about the event and to register your interest, email Sarah Dennis

Parent volunteers

The CMA has a network of volunteers, called key contacts, who are affected by cardiomyopathy in some way and talk to other affected people by telephone or email.  The volunteers, who have undergone brief training, include parents of children with cardiomyopathy.  If you would like to speak to a key contact, email Sarah Dennis





The Cardiomyopathy Association's Registered Charity Number is 803262.
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