Vascular Birthmarks Foundation Forum - View Single Post - Fatty Arm
Thread: Fatty Arm
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Old 02-06-2013, 12:01 PM
dancermom dancermom is offline
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Join Date: Jun 2012
Posts: 44
Default UK group on AVM survivors

Hi, there is a UK group on http://www.avmsurvivors.org/ that you may wish to join. There are other members who have arm avms on that group; perhaps you can get some doctor recommendations. There are over 75 members with arm avms on the website from all over the world.

Your condition sounds like Parkes - Weber Syndrome, which is caused by a mutation in the RASA1 gene (http://ghr.nlm.nih.gov/condition/parkes-weber-syndrome). PWS may be a spontaneous mutation, but can be inherited.
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