The
Cardiomyopathy
Association

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:

• It publishes an information booklet entitled Cardiomyopathy in Children and Young People.
• It publishes a quarterly magazine, CMA News, with medical articles about cardiomyopathy in children (see below) and patient stories. 
• It holds information days for parents and carers (the last one was held in London on Saturday, March 12th, 2011) for more details email Sarah Dennis at the CMA.
• It has volunteer parents (whose children have the condition) who talk to other parents and carers by telephone or email

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.

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

Cardiomyopathy in children information days

The CMA is holding a cardiomyopathy in children information day in London on Saturday, March 12th, 2011. The meeting will include presentations on cardiomyopathy in children, and issues such as medical management, current research, genetics and living with the condition. There will also be questions and discussion. The day is being 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

Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.