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Leaking Capillary Syndrome(Goodson's Disease)

Leaking Capillary Syndrome(Goodson's Disease)

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Posted by A.Suggs on February 06, 2000 at 20:25:21:

My sister was diagnosed with this rare disorder about nine years ago.At the time, there was only about 17 other cases of it in the world and at that time the longest anyone had ever lived with it was about eight years. She is taking several kinds of medicine and gets gamma globulin once a month. She almost died this past January was a year ago. Does anyone know of anyone else with this rare disorder? She has never talked to anyone who has it. I think Duke Hospital has a couple of other patients with it but she has not tried to contact them at this time. We would like to find someone else who has same condition to see how they are doing.


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