There are 605 people in the Neurofibromatosis map

History of Neurofibromatosis

What is the history of Neurofibromatosis?

Prevalence of Neurofibromatosis

What is the prevalence of Neurofibromatosis?

Neurofibromatosis jobs

Can people with Neurofibromatosis work? What kind of work can they per...

1 answer
Neurofibromatosis sports

Is it advisable to do exercise when affected by Neurofibromatosis? Whi...

1 answer

Stories of Neurofibromatosis

STORY
Neurofibromatosis stories
Shortly after birth in 1968 Michael was diagnosed with Neurofibromatosis 1 and has undergone 20 plus surgeries. For years Michael had high blood pressure spikes, profuse sweating episodes, pain, panic attacks and more that landed him in the ...
Neurofibromatosis stories
Over the years I have had a few people ask me why I haven't given up.  This really bugs me because there are other people who don't think it is fair that persons with disabilities (or major health problems) get 'special' accommodations, or the...
Neurofibromatosis stories
In March 2012 my hearing got bad suddenly in th left ear.  Subsequent tests showed a meningioma as well as a vestibular schwannoma, a classic diagnosis for NF2.  Both tumours were succesfully removed leaving me with facial palsy and balance...
Neurofibromatosis stories
I was told at a young age I had NF, nothing more.  As I got older around 18, lumps started to appear on my body.  I went to my doctor he told me he thinks they were NF lumps, he checked to see if I had large brown spots he counted 6 an...
Neurofibromatosis stories
The first time I can remember being diagnosed was at age 10.  I have several small tumors all over, cafe Au Lait spots and a couple of larger tumors. In 2010, I had a GIST tumor removed which according to my surgeon is very common with people wi...

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Neurofibromatosis forum

QUESTION
Question 64
Has anyone had surgery on their chest to remove tumors inside from nerves?

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Statistics of Neurofibromatosis

11 people with Neurofibromatosis have taken the SF36 survey. Mean of Neurofibromatosis is 2091 points (58 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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Neurofibromatosis