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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Why In The Field Of Neurofibromatosis The Conditions Of NF1, NF2 And NF3 So Badly Publicised Most Unheard Of To The General Public?

A myMPNteam Member asked a question 💭
Northern Ireland

Okay! I am an exception having the rarest form Schwannomatosis or NF3, having had it since 1970, but right across the medical board, the number of blank expressions of complete ignorance shown by the Medical professions and thus general public, they are recognised medical conditions and they can be BLOODY painful! I could breakdown my own medical experience of my condition, but there are OTHER people with NF1 and NF2 which are equally painful effects! I am tired of the complete ignorance shown… read more

July 15, 2023
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Could I Actually Get In Touch With Someone With Schwannomatosis, NF3, Not Neurofibromatosis NF1 Or NF2?

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Does ANYBODY Know Anything About Schwannomatosis NF3, Have ANY Personal Experiences With The Condition?

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Is There ANYBODY Researching The Effects Of Schwannomatosis Or NF3?

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