Doctors specializing in HCM

[pkblaha]

My adult son has HCM. He was diagnosed at the age of 8 yrs. My brother died of sudden death at the age of 25. After the autopsy was performed on him were we aware of this disease running in our family. He was being cared for at Texas Children until he became an adult. He has a ICD. He has been on medication for years. Recently he spoke with his doctor and for personal reasons they took him off his medication. He had syncope when he was a child but the medication controlled his symptoms. We live near Houston Texas. He is currently seeing a electrophysiolgist. He is supposed to be one of the best. I have been reading about doctors that specialize in HCM. I was wondering if anyone knew one in Houston.

[Sarah]

Re: Doctors specializing in HCM

Please call the HCMA office for info on any HCM specialists in a specific area.

The number is at the bottom of the page.

take care,

S

[Laoshur]

Re: Doctors specializing in HCM

I hope you will get great help for your son! The best place to start is with Lisa as Sarah said. Are you also checked regularly (every 5 years) yourself?

[pkblaha]

Re: Doctors specializing in HCM

I have not been tested in about four years. Actually, we are not as informed as we should be. My older brother has three grown girls and the brother that passed away has 1 daughter. They have not been tested since they were very young. They are under the impression that girls are not at a risk like males. I am learning that they are. My mother has congestive heart failure. My father does not have heart problems that we are aware of.
I am concerned about my son though because he has been on medication since he was 8yrs old. He is now 29. I have been taking him to the doctor yearly to have echos done every since then. I don't really understand the echos except they tell me that it has not progressed much. I am not sure about what to ask either. He wanted to be taken off his medication because of reasons best known to men. He says he feels good and having no symptoms and is not as tired since he is off the medication. I don't know how I feel about this.
When my brother passed away in his sleep at 25. We didn't know about this heart condition. We found out from his autopsy. Dr. Towbin was doing research on this disease and did a study on our family. I wish that I hadn't been so young then because I didn't understand alot of what he told me. I am glad that I found this website because I read it daily in hopes of learning more.

[Reenie]

Re: Doctors specializing in HCM

I'm glad that we're here for you. Please let us know if there is anything we can do for you.

Reenie