Help for Research to find out if PWS can be Gentic - Vascular Birthmarks Foundation Forum
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Old 02-09-2005, 05:15 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Help for Research to find out if PWS can be Gentic

Hi everybody,

A very good friend of mine has PWS on her head, neck and on her back on the spine. She also has more indetailed problems which she thinks she possably might have a different kind of SWS (not of normal conditions).

She has two daughters one with a PWS on her bottom neck which is the oldest and the other has PWS/SWS on the face and head which is the youngest
She also has a son with nothing in the middle. My friend think could
The daughter that has SWS has had two brain surgeries and might need a third to control her seizures. This would be the first reported SWS person to have three brain surgeries and she is only eight years old.

My friend is looking for a gentitis (I think that is how you spell it if) that will do the research for free to do testing (to be a gennypig is the way she put it) to find out if her PWS/possably SWS could have could have caused her daughter's conditions. She can not afford to see this kind of doctor out of her own pocket.

If anybody would like to know more about her and her daughters conditions, or would be interested in donating any kind of money or (if doctor) services to find out more details about this email me personally and I can get you intouch with her. She is open to any kind of testing that could help make some dicoveries.

Thank you for any kind of support.

Hank
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