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Rare Disease Cycling
Last Post 12/20/2013 03:56 PM by 79 pmooney. 0 Replies.
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12/20/2013 03:56 PM

This team and sponsor are raising awareness of rare genetic diseases such as muscular dystrophy, sickle cell anemia and hemophilia.  Good for them.  Two of those diseases hit close to home for me.  Growing up, my parents, both tennis players, both into civil rights, bought our first TV to watch Arthur Ashe.  I didn't know then he was a hemophiliac.  I learned of AIDS before it had a name reading the local paper in 1979, the San Francisco Chronicle and had my awareness kept high as I answered the questions to give blood many times.  Learning the Ashe had received AIDS through a transfusion, not very different from the blood returns I have received so many times at platelet donations, hit me hard.

There is a young adult I have know since she was 12.  I knew before I met her she was sickle cell.  I had already watched up close the crises of a sickle cell-like but much rarer genetic disease.  I haven't seen up close this young woman's trials, but the 5 years I worked with her dad, I would get reports every time she was back in the hospital.

Good for this sponsor and team.  Go out and show them!  Get on the podiums.  And speak out.  People need to hear it.  (Esp sickle cell, which is far from a rare disease, more like 1 in 200 blacks.  If it were in the general population, this would be treated as an epidemic.

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