Families affected by the inherited heart muscle disease cardiomyopathy are being invited to a special information day in Chester this Saturday (March 28).
The condition, which affects people of all ages, is the main cause of sudden death in those under 35, including in apparently fit young sportsmen and women. But most affected people can live a long and full life if they are diagnosed and appropriately treated.
Cardiomyopathy expert Dr Gerry Carr-White, from Guy’s and St Thomas’ NHS Foundation Trust in London, will be talking about the different types of cardiomyopathy, latest treatments and research into the condition, which affects around 1 in 500 people.
The information day is being held from 9.30am-5pm at the Mercure Chester Abbots Well Hotel, Whitchurch Road, Christleton, by Cardiomyopathy UK, a charity that provides information and support to affected families. More than 60 people from around Cheshire and beyond are expected to attend. For many it will be the first time they have met others with the disease.
Dr Carr-White, a consultant cardiologist and the hospitals’ lead for heart failure and inherited cardiac diseases, will be talking about dilated, hypertrophic and arrhythmogenic right ventricular cardiomyopathy, diagnosis, management of the conditions, latest treatments and developments in research.
Genetics counsellors Sasha Henriques and Natalie Moreton, from the genetics service at the Manchester Centre for Genomic Medicine, will be talking about the regional genetics service and how it can help families with cardiomyopathy.
Cardiomyopathy UK’s chief executive Robert Hall will be outlining the services the charity provides to patients and their families. Julie Rees and her 21-year-old daughter Jenny, who was diagnosed with cardiomyopathy soon after she was born, will talk about living with the condition in the family and the Cheshire and Merseyside Cardiomyopathy Support Group they run.
For more information about cardiomyopathy or to book a place at the information day, see the website www.cardiomyopathy.org , email sarah.dennis@cardiomyopathy.org or call Cardiomyopathy UK on freephone 0800 0181 024.
