Cardiomyopathy Association supporters raised £640.10

About Cardiomyopathy Association

The Cardiomyopathy Association is a national U.K. charity that works to provide information and support to individuals and their families affected by cardiomyopathy.

‘Cardiomyopathy’ is a medical term meaning ‘disease of the heart muscle’. It is often thought of as a ‘rare’ condition. It therefore receives less attention than many other conditions. This perception is wrong. Some forms of cardiomyopathy are estimated to affect 1 in 500 of the population. The condition can have a wide range of presentations. For example, there may be no or minimal symptoms and the individual may not even know they are affected. In others the first symptom may tragically be sudden death. Thankfully, the latter affects only a small percentage of those affected by the condition. However, the risk remains. Hypertrophic cardiomyopathy (HCM) is the most common cause of sudden cardiac death in people under the age of 35. This is a condition passed on through families. Children of an affected person will have 50% chance of inheriting the condition.

People diagnosed with cardiomyopathy may face a bewildering situation where they search for answers to the many questions that arise. The CMA has developed range of authoritative information resources to help patients and their families. This is supported by a ‘helpline’ service and website. The CMA also organises meeting around the U.K. for people affected by cardiomyopathy. These meetings provide them with the opportunity to learn more about the condition and meet others similarly affected.

The CMA works to raise awareness of cardiomyopathy amongst health professionals and the general public. However, raising awareness is only part of its work. Alongside increased awareness is the need for education and the support of clinical care for patients. The CMA organises high profile national conferences for doctors and nurses to provide educational opportunities on the latest practice in the diagnosis and treatment of cardiomyopathy. To support direct clinical care the CMA has so far provided funding for a clinical nurse specialist and a consultant cardiologist at the specialist cardiomyopathy centre at the Heart Hospital in London. To increase access to specialist services the CMA is leading a ‘Regional Clinics’ project to provide a nurse specialist locally and link the centre to the London specialist centre by a CMA funded telemedicine facility.

The CMA has campaigned, since its creation, for the screening of first-degree relatives of individuals affected by cardiomyopathy. The need for such screening has been recognised by the government in the new chapter on Arrhythmia and Sudden Death in the National Service Framework for Coronary Heart Disease. The CMA was involved in the development of this chapter is presently serving on three Department of Health committees aimed at guiding the implementation of the quality standards included in this important document.

The Cardiomyopathy Association is involved in a wide range of activities beyond which may be expected for its size. These activities provide support and information to patients, educates health professionals and provides funds to promote excellence in clinical services for the benefit of those affected by cardiomyopathy.