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I have a new HOH friend, she works in a neurology clinic and has muscular

dystrophy too. I was telling her I had NF2 and she didnt know what it was and

said shed ask a Dr. at her work about it. This was her reply to me. Scary how

little drs know, yeah, its kids only disease, uh huhhhhhhh, he obviously

not know nf1 from nf2, very scary considering we know more than many drs.

Hi Cindy,

I asked my Dr. that takes care of me about your thing today and he said

it's

mostly found in youth and followed by the pediatric neurologist and it is rare

like

you said, but he has heard of it.

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