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Is anyone out there familiar with Parkes-Weber Syndrome?

This is rare genetic disorder that I keep getting conflicting info about. My seven year old was diagnosed with it 6 ys ago. Most doctors we've seen don't know what it is. Even the genecist we just saw didn't seem to know what she was talking about. The only new info I've found is that my son may be at high risk for heart failure at a very young age. (Early 20's.) I need solid answers and don't know where else to turn. He has seen pediatricians, a heart specialist, dermatologist, bone specialist, had an MRI, and I'm more confused than ever.

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lizlaughlove

Asked by lizlaughlove at 4:32 AM on Aug. 6, 2009 in Kids' Health

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