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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 28 11:57am | Replies (877)Comment receiving replies
Hi all... I'm in the uk. And my docters took over 20years to tell me what was wrong. I've been blackin out from the age of 16.... I'm now 39 and was told I had hcm. 3 years ago... every time I had a hcm event I called 999 want to hospital and all looked ok.. I would be in hospital for 1-3 days and then sent home with the all clear. But I'm here :). I have 4 kids and 2 grandchildren. All my kids have been gene tested and all have came bk as clear. Sometimes I do not believe it, all 4 are well..... so my grandchildren will be safe... but any way no more about me.. hi all..... 🙂
Replies to "Hi all... I'm in the uk. And my docters took over 20years to tell me what..."
Hello, and welcome, Tracey. I was misdiagnosed for 23 years, so I can relate. I agree, if you can find one of the HCM specialists in the UK, that is where you should be. You can check out http://www.4hcm.org and they can help you find someone. This disease is quite the challenge for those of us who have it, that's for sure. It is so easily misdiagnosed and we, particularly women, get patted on the head and sent home. Been there, done that.
I presume you were gene tested and they found one of the HCM genes, correct?
Yes. I've been gene tested.. I'll check that page out now.. many thanks. 🙂
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Welcome Tracey, welcome to the site. I think you'll find the site can help you relate to others who are going through similar experiences. I'm 56 , was diagnosed with HCM two years ago and also had a septal myectomy at Mayo Clinic. The surgery changed my life. (full disclosure, I work at Mayo in Communications) It worked and I feel better than I have in years. I never blacked out but had shortness of breath and extreme fatigue and always felt like my heart was working way too hard.