Re: Teen Recovered after collapsing at basketball game!
Tom - I just wanted to note something about your closing line... and I say this with ALL due respect and honestly I am not saying it to "you" but to those who read this board.. and to those who think they "know the answer" to the "problem".
Originally Posted by tom531966
For 16+ years I have been working to educate people (med professionals and others) about HCM.. for over 30 years I have lived with HCM myself... For the past I would say 10+ many companies have attempted to make "for fee" models to find those with HCM (all have failed) and for many years others have tried to raise awareness using things like community based screenings - with limited success and many failures... What is my point? There is NO... ONE answer... there are paths that will lead to change and we must all take an active role in this process... I would venture to bet not many people want to sit in my seat for a day and listen to the heart breaking stories of death, disability and disappointment life with HCM has brought to many of our families... and I would not want ANYONE to think that one simple ...answer...test...doctor...nurse...quiz...questio nnaire... or similar... is all it takes to take away this loss or situation... But together in a process we can build up knowledge, we can share our experience, we can work to change the law and little by little.. day by day... things will bet a little better and one day in the future all these little steps will have made a huge advance in our knowledge, understanding and ability to identify those at risk and with HCM sooner.
In short... it is a marathon.. not a sprint... come run with me!
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 43 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)