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Kaylee_F93
Posts: 90
I am making this Discussion for you telling your stories(If you want). I will start with telling you about myself. I was diagnosed with Ehlers-Danlos Syndrome with I was 15, I am a carrier of Hemophilia A, and many other people in my family have Hemophilia. I know these two things and many other disorder/diseases can get in the way of staying active and being fit. I have went to an Annual Meeting since I was born that teaches you how to deal with some of these things(specifically Hemophilia, but I have seen people there with Sickle Cell, Ehlers-Danlos, and Von Willebrand Disease).
http://www.famohio.com/
We have went to this for knowledge and conversation. My husband ( whose family was not effected by this before he met me) has learned a lot from this and will help us when we have children. I still don't know all I should about what I have.
My brother has Hemophilia and has suffered since he was born. He had a brain bleed and the doctors thought he would not be able to walk, talk, or eat on his own. After growing he has been about to do these three things and much more. He is a miracle in my eyes and I will always remember that no mater what happens. He is now in his mid 20's and is battling Inhibitors and has recently also been diagnosed with Ehlers-Danlos Syndrome.
My Granddad also had Hemophilia and contracted AIDS from it in the 1980's. He passed away in 1989 from this and his brother passed away the same way. I never had the privilege to meet him but I have been told I act just like him.
Feel free to share your stories.
http://www.famohio.com/
We have went to this for knowledge and conversation. My husband ( whose family was not effected by this before he met me) has learned a lot from this and will help us when we have children. I still don't know all I should about what I have.
My brother has Hemophilia and has suffered since he was born. He had a brain bleed and the doctors thought he would not be able to walk, talk, or eat on his own. After growing he has been about to do these three things and much more. He is a miracle in my eyes and I will always remember that no mater what happens. He is now in his mid 20's and is battling Inhibitors and has recently also been diagnosed with Ehlers-Danlos Syndrome.
My Granddad also had Hemophilia and contracted AIDS from it in the 1980's. He passed away in 1989 from this and his brother passed away the same way. I never had the privilege to meet him but I have been told I act just like him.
Feel free to share your stories.
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