Hello, This is a very sincere and urgent request to please correct some essential facts in this article.
Firstly, NF2 is NOT a cancer - in almost 100% of cases, the tumours are benign. The chance of tumours becoming malignant is no more likely in NF2 sufferers than in a normal health adult who may develop any other cancer.
The symptoms caused by NF2 in the early stages, and the way NF2 is usually discovered and diagnosed, are due to tumours developing on both of the auditory nerves (vestibular schwannomas) which causes tinnitus and lessened hearing in one or both ears.
Secondly, the life expectancy is NOT 40 years. The NHS website is inaccurate enough in stating that it is 65 years. The life expectancy varies enormously between individuals and in many cases is no different to any other healthy adult.
As a 22 year old who was diagnosed with NF2 less than two months ago, it is shocking to read such inaccurate information published on a supposedly trustworthy website.
If I had read this when I was first diagnosed and started looking online for information, I would have been much more horrified and devastated than necessary. NF2 is not a death sentence, so please don't 'advertise' it as one.
Please, visit the Neurofibromatosis Foundation website, educate yourselves, and re-write this article. It is HORRENDOUSLY inaccurate. This is fantastic news, tainted by the rest of the article's content.
Many thanks.