[Age of onset]

Author: Amanda (---.proxy.aol.com)

Date: 10-18-02 23:04

I recently lost my father to HCM at the age of 53. I have done a lot of research regarding this topic and I am aware that it is a familial disorder. He was diagnosed when he was 30. Unfortunatley, my father was adopted and we have no medical history about his birth family. I was just wondering if there is any evidence of what is a typical age for onset of HCM and how often screening should be done in adulthood.

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[Re: Age of onset]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 10-19-02 13:32

If you are screened after the age of 25 can are found to be clear - -AT this TIME we are suggestiotn you be screened every 5 years - or if symptoms develope. The fact that you have little family history is hard... however if you want to seek out medical information there are avenues open to you to seek that information, even from sealed files.

Also all of your children should be screened, even if you are clear.

Sincerely,

Lisa

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[Re: Age of onset]

Author: sarah b. (---.kc.rr.com)

Date: 10-19-02 21:12

Dear Amanda,

Typically, HCM shows up in the teens and late twenties, but it can show up at any age. I'm very sorry about the loss of your father.

I highly recommend seeing a specialist --please call the HCMA at 973-983-7429 to find one near you.

take care,

Sarah

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[Re: Age of onset]

Author: Julie (---.cinci.rr.com)

Date: 10-19-02 23:30

I was diagnosed with HCM at 35.

I had an echo and stress test at 24 because I was having what I call flutters.

The Dr. Diagnosed me with mitral valve prolapse.

After being diagnosed 11 years later after my brother died made me wonder: Did the Dr. miss it? did he miss it because they were not looking for it specifically like they were in 97?, was it just the beginning so the septal thickness was not there? had they found it then would my brother still be here because he would have been tested?

Usually it is manifested in teen years, but I am proof it happened a tad later in life.

Julie

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[Re: Age of onset]

Author: Susan (---.ceg.com)

Date: 10-21-02 16:30

Hi, I was told from age 28 that I had mitral valve prolapse. Just keep away from caffene and premedicate myself with antibiotics before dental work. At age 48 my symptoms really kicked in and did not go away. Even then it took 2 more yrs and many echos to find out I had HOCM. All this time every doctor told me I had a heart murmur but was unconcerned about it. So, when did my HOCM develope is still a mystery to me. One thing, my father was treated for years for irregular heart rhythm and even had fainting spells. Not once was this disease mentioned but I am convinced now that he had it. He died 2 years ago from lung disease but to the day he died he had symptoms of chest pain, sob and fatigue. When my children and grandchildren were tested we told them what to look for. So far no one has tested positive for this, but they are still young yet.