Spokes Person

[krissheffield]

I live in Virginia. It's been very hard for me to find doctors around here that know anything about HCM. I finally have a cardiologist that knows a little. I would like to know what I can do to get more doctors interested in this disease.
There is a teaching hospital VCU right up the street. The most recent time I was there (because I passed out) they literally tried to kill me because they didn't know anything about the disease. A nurse saved me at the last minute because she knew someone that had it too.
I've lived with this disease all my life but only recently found out what I actually have. So many misdiagnosis! So many times I could have died because of the misdiagnosis.
I want to help people become more aware of this disease! I don't want any more people like me thinking it's "all in their heads" too!!
What can I do to start a group down here? or is there one?
How would I go about getting funding for that kind of operation?

[Sarah]

Hi Kris,

Please call Lisa, the HCMA president. First, you can have the office send doctors and hospitals the HCMA's doctor's education kit. Second, the HCMA has guidelines for hospitals to become HCM Centers of Excellence and you can get info on that. Third, Lisa has thought about HCMA local chapters from time to time but I don't know the status of it right now.

The office can give you lots of info on how to move forward.

S

[Laoshur]

Hi, we must be neighbors! I taught in the Biology Department at VCU for nine years. I have sent you a private message so you can contact me if you would like to.

Rhoda