I have a PWS on my right arm from my bottom 3 fingers to roughly the top of my bicep. The numbness happens in the arm when I walk for longer than about 20 minutes. The numbness roughly traces the bottom of my arm and hand where the birthmark is located. I can alleviate the numbness by raising the arm above the height of my heart. If I stretch the arm over my head the numbness goes away over a period of 15 to 30 seconds as if something (blood?) is draining from my arm and the pressure in the arm returns to a more normal state. If I keep walking and don't raise my arm the numbness does not go away. My hand ends up feeling like "a piece of wood" so that when I get home and try to reach into my pocket to get my house keys I can barely manipulate my hand. Does anyone else recognize this phenomenon? Has anyone received treatment to deal with this and if so did it work?
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment and provides informational resources as well as sponsors physician education, research, and programs that promote acceptance for living with a birthmark.
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