As much of the work of the HCMA is done via the internet, we have participants from around the world, including Turkey.
In the past 10 years the HCMA has had the opportunity to work with thousands of families and make some rather interesting observations about challenges in diagnosis, access to family screening, varied treatment options based on socioeconomic and geographic factors, and overall understanding of HCM within the medical community.
Of significant concern to the HCMA is the high number of cases of young people (age 8-35 years) diagnosed originally with athletically/exercise induced asthma.
Along a similar theme, the recent controversy over sudden deaths in children taking medications to treat Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) including Adderal (dextroamphetamine), Concerta and Ritalin (both methylphenidate) was brought to the HCMA's attention.
Interestingly women have reported to the HCMA that they feel symptoms on average at the same time or even slightly before men do but are often dismissed by the healthcare community as having noncardiac causes for their complaints.