Hypertrophic Cardiomyopathy

Probably to most of you (including me until a few years ago) the name of this disease means nothing.  Unfortunately this disease (also known as Sudden Death Syndrome) is on the increase and it is estimated that 4 fit and healthy people die from it every week.

About 20 years ago my mother in laws cousin collapsed and died very suddenly, he was only 15.  For a long time no-one could pin-point exactly what had caused this and all they could say was that he had had a heart attack.  He was a fit and healthy normal 15 year old so his family began to ask questions about what could have caused this.

After the post Morten it was confirmed that he had Hypertrophic Cardiomyopathy (HCM).  Unfortunately at that time this was a virtually unknown disease and so trying to find information on it was difficult.

Years on and after extensive research it is now known that HCM is the most common cause of Sudden Death in those under 30 years of age.  It is estimated that 10,000 people have the disease in the UK, however because there are no symptoms many more could be carrying the disease and have no idea.

What is it?

HCM causes an interruption in the vital electrical signals that keep the heart beating.  It is an incurable disease which causes excessive thickening of myocardium (the muscle in the heart).  In an HCM patient the muscle thickens without any obvious cause.

It is a hereditary disease and can affect men and women of any ethnic origin. If a parent is found to have the disease there is a 50/50 chance any children they have will also have it.

However, not everyone who has the disease if affected by it.  Luckily for our family my mother in law and my husband are only carriers of the gene and will never be affected by it.  This unfortunately for us means our children have to be tested for it too.  To our relief our eldest was tested and was completely clear and from an Echo Cardiogram last week it looks like our youngest is clear too.  However, they will both have to have regular screenings.

Symptoms

These vary from person to person.  They may begin in infancy, childhood or in middle or elderly life.  Some patients never have any symptoms and the disease can cause unexpected sudden death during or after excessive exertion.  There have been a few high profile cases of sportsmen/women collapsing during training etc, and after their death it has been found to be they were carriers of this disease.

There are a few symptoms that may be present, however, if a person has any of these it does not automatically mean they have HCM, these include:

• Shortness of Breath.
• Chest pains (usually brought on by physical exertion).
• Palpitations (rapid, irregular heart beat)
• Light headedness, blackouts

Many sufferers do not know they have the disease and it’s not until a member of the family presents that other members are screened and are found to have it.

Cure

At the present time there is no cure for the disease – treatment once diagnosed is by using drugs to control symptoms and sufferers are often told not to do any hard physical exercise. Carriers of the gene like my husband attend regular screenings of the heart.

Raising Awareness

Unfortunately at the present time no general screenings are available for this disease i.e. it’s not done until a member of the family either dies or shows symptoms.

The Charity Organisation CRY are appealing for legislation to be brought in for schools to carry out annual screenings on children and continuously campaign for awareness of the disease

They have set up the CRY Centre for Cardiology within the Olympic Medical Centre and offer ECG, Echo Cardiogram and Cardiac Consultations for all athletes aged between 14 and 35

After all so many deaths can be prevented if the disease is diagnosed and treated with drugs etc, but it is not until a person is screened the disease can be found.

I try and hold an annual Charity Disco for the charity to raise funds for their work and to try and get people to understand a bit more about it.

Additional Information

Please visit the CRY website for any further information www.c-r-y.org.uk

This is a members article written by feemcg