Vascular Birthmarks Foundation Forum - View Single Post - Does anyone know much about Tufted Angioma and KHE?
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Old 08-21-2010, 12:12 PM
sarahs mum sarahs mum is offline
Junior Member
Join Date: Aug 2010
Posts: 1

Hi Alexis,
keep searching and doing your research. E-mail doctors around the world directly and ask for their opinion. ask everyone you know to ask everyone they know. our daughter was diagnoised with a KHE at 12 weeks of age. she is now 20 months old. she has had weekly vincristine and daily steroids with variations to the doses here and there.
so far, i have found out that there is no magic quick fix answer. everyone tells me it will take a long time, probably years... maybe 4 if we're lucky.
in the meantime, we just try to enjoy her as though everything was normal.
good luck. i'm happy to chat if you like.
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