Cardiomyopathy can also affect the families of those with the condition. We spoke to Ishan to find out what his experiences are as a child of a parent with cardiomyopathy.
Q1: Tell us a bit about your background - what's your connection to cardiomyopathy?
A: I am currently 17 years old, and I live with my family in the UK. Around four years ago my dad was diagnosed with dilated cardiomyopathy (DCM), which was honestly quite a shock at first. I am now volunteering with Cardiomyopathy UK to do my part and to help raise awareness of this condition. As a family, we have subscribed to Cardiomyopathy UK’s My Life magazine, which has helped us understand my dad’s condition much better.
Q2: What’s it like having a parent living with cardiomyopathy?
A: We first decided to get my dad checked out as he would get tired quickly during walks and hikes. This was especially true when we would walk uphill. After the cardiologist confirmed that my dad had dilated cardiomyopathy, we adjusted various things to take his physical condition into consideration. I would say this has actually made us closer to him, and the support we have received from doctors and the resources available from Cardiomyopathy UK have helped my dad live with his condition much more easily.
Q3: What specific things have you had to do differently as a result of your dad's diagnosis?
A: Since my dad’s diagnosis, we have had to make a few adjustments. These include less strenuous walks with my father and eating foods that are better for heart health, such as whole grains and fatty fish. I have also had to help around the house more, such as mowing the lawn or helping my dad move heavier objects.
Q4: How have other people responded to you when they’ve learnt about your situation? Is there anything people have done well, or not so well?
A: We have only told close family members and friends about my dad’s condition. They have been very supportive, which honestly means a lot. They do check in sometimes via a phone call to make sure everything is alright and have helped to normalise things by not treating my dad any differently than before.
Q5: Do you have any advice for someone talking to a young person about their loved one's cardiomyopathy diagnosis?
A: I think the best approach is to keep it simple and straightforward. Explaining cardiomyopathy in simple terms - like how it affects a person on a day-to-day basis - is much better than overloading them with information. Using big medical terms will just make them more confused. Instead, give them practical advice, such as how a loved one may need more rest after physical activity.
Q6: What advice do you have for other young people who have parents or loved ones recently diagnosed with cardiomyopathy?
A: It’s ok to feel unsure at first, like I was when my dad was diagnosed a few years ago. Asking questions and reading resources (like the Cardiomyopathy UK My Life magazine) will help clear up any confusion. You should expect to help your loved one with cardiomyopathy a bit more, such as by lifting heavier objects or mowing the lawn in my case, but this becomes normal quickly. I would also argue not to make your loved one’s condition feel like a huge deal, as this could make them feel worse.