Stories of Neurofibromatosis

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
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
My name is Nicole I am 19 and suffer from neurfibomatsis type 1 and ehlers danlos type 3 and on going gastric problems. I have spent many months in and out of hospital, I've had many operations and procedures. But I don't let this stop me from enjoyi...
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
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...

Tell your story and help others

Tell my story

View more

Neurofibromatosis forum

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

Ask a question and get answers from other users.

Ask a question

View more

Statistics of Neurofibromatosis

10 people with Neurofibromatosis have taken the SF36 survey. Mean of Neurofibromatosis is 2135 points (59 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

View more

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map


Join the map