My name is Jasmine and I am from South Wales. I have not been diagnosed with cardiomyopathy, but it has certainly had an impact on me.
My partner, Elis, was diagnosed with hypertrophic cardiomyopathy at 22 years old and has had to adapt his lifestyle since. As well as Elis, I have also had to adapt through understanding what cardiomyopathy is and how to support someone who has been diagnosed with the condition.
I hadn’t heard of cardiomyopathy before meeting Elis, so to go from not knowing about the condition to now supporting someone with it, as well as being part of Cardiomyopathy UK’s children, young people and young adult (CYP&YA) panel, has been a big responsibility to take on board. Elis was diagnosed in 2015 and was quite taken aback when he had discovered that he had the condition. I was by his side as he was diagnosed, which gave me the opportunity to try and reassure him that he will not be on his own going through this, and that he will have support from his family, his friends and myself.
Understandably, Elis had a very negative approach towards his condition when he was first diagnosed. As he was the only individual out of his friends to be diagnosed with a heart condition he felt very alone and different from everyone else. A few months later he decided that it would be best for him to attend the national cardiomyopathy conference in London to hear other individuals approaches to their diagnosis and some of the leading doctors in cardiomyopathy. This was very reassuring for Elis, it made him realise that he was not alone with his condition. He was able to meet others who are diagnosed with a heart condition, he had opened up and began to start talking about it more and he was also able to hear how their diagnosis changed their lives like it did with his. This is exactly why the CYP&YA panel has been organised, to help those who have been diagnosed meet other people within their age range who would listen and discuss about their difficulties coming to terms with it and experiences.
I have always said to Elis that I will never understand what it is like to be diagnosed with a heart condition, but that I will always be as supportive as I can be with it (and more).