Mark Van Linden
Thank God you know about your daughters condition at this age. My name is Mark Van Linden and I too have marfans. I am 31, educated and a professional who knows more about marfans than your average joe. But the reason I felt compelled to write you, is your daugters gym teacher. There are many ignorant people out there with several professional occupations and authority. It is very important that this one is not allowed to impact you or your family. Educate this person and battle them with information. 1 in 10000 people have marfans and children drop dead during athletic activities every year. As a matter of fact, I just returned from Houston Medical Center a few weeks ago where I met a woman who discovered her boy had marfans after he collapsed from a disection. After a little research she discovered that 4 boys over the last 4 years have suffer and died from the samething in 4 surrounding school districts, but there was never any communication between the schools or athletic departments causing any lookout for the condition. If so, those boys may still be alive. Education is the best weapon for this. Also you may want to consider joining the National Marfans Foundation. They will help you be aware of the latest and greatest. Feel free to contact me with any questions or concerns. Mark