HOCM

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Comment by Venkateshwar Rao Mamidala on January 6, 2011 at 12:13pm

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Comment by Meghan Perron on October 6, 2009 at 5:50am

I am about 3 hours from Seattle. My daughter had an ICD placed in March then had her open heart surgery in June. There was a huge sense of relief when the ICD was placed. We found the disease at a well child check in December. The pediatrician heard a murmer and the next day I was sitting in a cardiology office getting what I felt was the worst news ever.

Comment by Lisa Mccann on October 6, 2009 at 5:31am

Megan
your near Seattle? They hve HOCM facility there
also im in my early 40s and there was not much education on HOCM back then, or i would not have children if i known how strong it is. my youngest son who is 22 does not have HOCM and he is going up for genetic testing in a few months. The testing is done here n Canada but sent up to Harvord University im sure yours is done there to. its a great program they have , i was amazed how they done ours and what they find and how strong it is in my family genes. I have my paper work on it. My complications are artial defibillation and a cut cord in the electrical condyctivity area, Everyone has 3 one of mine is cut off, great uhh bad enough HOCM causes arrythmias and electrical problems now i find i have this. I am to get a defib implanted soon , i had it on hold as i wanted more research on them. Itbe a good idea if your daughter got one to. I hope she is able . where your from , its a peace of mind . it would be implanted and no worrys . i myself am not impressed with having to get one, i hate needles and any pain lol. but its my only way of feeling SAFER . and at ease. how did you find out your daughter has HOCM? the school?

Comment by Meghan Perron on October 6, 2009 at 5:13am

Hi Lisa. I am from Oregon. My daughter is 11 years old. She is handling it like a trooper. I should hear about the gentic testing in about 2 weeks. I am sorry to hear about your complications with this disease. Even though we have it...I still can not imagine the feeling of loosing a child from it. My daughter has already decided that she is not having any children because she does not want her children to go though what she has.

Comment by Lisa Mccann on October 6, 2009 at 4:53am

Hi Megan
where are you from ? its not unsual for someone to be born with HOCM without a trace in family members but it is rare. keep me informed how the genetic tests go? We had ours done as well. My mother had it (passed away from HOCM in 1967) son has it he is 23 and other son had it passed away 1992 at age 11 yrs old. I have it with some other complications that have arised from HOCM. how old is your daughter?

Comment by Meghan Perron on October 6, 2009 at 4:07am

I have a daughter with this disease. As of now....she is the only one in our family that has developed this disease. We just got done with genetic testing so we will find out if there is a family gene or if she truly is the first one. I wish for a cure daily. I hope to be able to bring attention to this disease...just not sure where to start.

Comment by Lisa Mccann on October 6, 2009 at 3:59am

Born to HOCM, this heart deffect has attacked my family through many generations. i want this exposed worldwide for we can find a cure. there is only control of this heart deffect. no cure. Boston University has found some genes responsible for this deffect. we need more people to push for a cure . Cahritys are in the works in Canada