I was diagnosed with Arrhythmogenic Right Ventricular Cardiomyopathy in 2009.
I have an Internal Cardiac Defibrillator which helps to prevent sudden death. I have lost my sister, in 2007, and my brother, in 2010, to this disease; it has had a devastating effect on our family.
Throughout all of this Cardiomyopathy UK has provided invaluable information and support and, because of this, I decided I wanted to volunteer to set up a support group in Sheffield. There are several support groups around the UK but none in this area. The nearest one previously was in Leeds, which I attended in November last year to learn about how Cardiomyopathy UK groups are run.
Cardiomyopathy UK is the UK’s heart muscle charity, and it has just celebrated its 30th anniversary. The charity provides information, advice and support to enable anyone affected by cardiomyopathy to be able to lead as full a life as possible. The charity raises awareness, improves diagnosis and management of the condition, and works to promote medical research. Its support groups provide an opportunity for people living with the condition, plus their families and carers, to find out more about cardiomyopathy, as well as meet others also living with the condition.
I am now the support group leader of a new Cardiomyopathy UK Sheffield/South Yorkshire Support Group which launches in the city this month. This support group is for people living in South Yorkshire with any form of cardiomyopathy, their family members, friends and supporters.
Our first meeting will be held on Saturday March 30 in the Community Room, at South Yorkshire Fire Headquarters, on Eyre Street. This first group session will run from 2pm to 4pm and will feature a talk from Dr Oliver Watson, who will be giving an overview of cardiomyopathy. An Inherited Cardiac Conditions Service specialist nurse will also be attending to answer any questions.
We are also looking for new volunteers d. For more information about this group, call 01494 791224.