Vascular Birthmarks Foundation Forum - View Single Post - AVM Right Arm
Thread: AVM Right Arm
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Old 02-06-2013, 11:04 PM
dancermom dancermom is offline
Join Date: Jun 2012
Posts: 44

metoo, I am sorry to hear about your husband. Having so many avms means that your husband may have an underlying condition. There are several possibilities: HHT, Cowden Syndrome, neurofibromatosis, perhaps one or two others. Your husband needs to be screened for these conditions by a doctor who is knowledgeable. What area of the country do you live in?

I would also recommend you join, where there are other members who have these conditions. There are studies being done now with the drug Rapamune (Sirolimus), an antiangiogenetic drug which may help to prevent the progression of AVMs. It is a serious drug with serious side effects, but it is worth your speaking about to your husband's doctor.

Also, I don't know if you have children, but it is possible that your husband's condition could be inheritable by your children. Your husband should consider genetic testing.

Last edited by dancermom : 02-06-2013 at 11:04 PM. Reason: error
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