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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.

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

A myMPNteam Member asked a question 💭
Northern Ireland

I have had the condition since 1970, finally diagnosed with it in 2017, rather than Neurofibromatosis NF2 which I was wrongly diagnosed in 2006, I have had three surgical removals to remove schwannomas in 1970, 1997 and 2012, I have NEVER met anybody with the condition EVER, or been in contact with someone who had this particular plight?

February 18, 2023
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