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Hi, Iam just wondering how long and how hard for a diagnosis?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 5 10:02pm | Replies (15)Comment receiving replies
@pamela47 Greetings to our fellow big hearted people Down Under! Many cardiologists are unfamiliar with HCM in the states, too. In the cardiology office where I am a patient, different cardiologists specialize in different aspects of heart disease, I was fortunate to be assigned to one very knowledgeable about HCM at my first visit. I do not know if more men than women have HCM, beecause it's not linked to the x or y gene, only that the chances are 50% if a parent has it. Now, what can you do to help educate people - and doctors - about HCM? The Hypertrophic Cardiomyopathy Association, office in New Jersey, has outreach in several other countries. The website is 4HCM.org. May I suggest, contacting them and informing them about the fact that ONLY 8 women in 10,000 are diagnosed in Australia? I think the people in the organization would be shocked!
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@walkinggirl
even worse than the number diagnosed in Australia is that men are diagnosed at more than twice the rate as women. Since the genes are not sex linked, this smacks of misogeny.
When my previous cardiologist refused to discuss the possibility I might have HCM, or to arrange any tests that would identify it, I had to search for a cardiologist who might be more open to that diagnosis. Luckily I found one who was part of the research into the effectiveness of mavacamten.
I also found a new GP after the one I had at the time suggested my symptoms (which had hospitalised me several times) might be due to anxiety. (I was a psychologist - I knew anxiety was not causing my symptoms). My new GP asked if I had written to the previous cardiologist and expressed my views. I think I will do that, and pricide the link you suggest.
Thank you