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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 ...
Views: 1217 Dec 20, 2015, 5:57 PM by Michael
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...
Views: 673 Dec 1, 2015, 12:58 PM by Judith
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...
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...
Views: 579 Dec 14, 2015, 11:08 AM by Charles
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...
Views: 528 Dec 20, 2015, 9:42 PM by Heather
Neurofibromatosis forum
Has anyone had surgery on their chest to remove tumors inside from nerves?
Views: 429 Dec 19, 2015, 8:52 AM by Ashley
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