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Neurofibromatosis - Carers UK Forum


For issues related to specific conditions and disabilities.
Hi Just wondering if anyone can give me information about Neurofibromatosis?

Any links or helplines would be good, if possible.

Have very basic info from the hospital but had a Genetic Counsellor out and they've taken literally all names of all family members etc.

Would really appreciate anything you can tell me, however basic or however complex, thank you
If you type neurofibromatosis in your browser's search box it will give you a lot of links.

this one is for the NHS website:
http://www.nhs.uk/conditions/Neurofibro ... ction.aspx

and this one is for the Neurofibromatosis Association]http://www.nfauk.org/[/url]

but there are a lot more.

I had reason to look it up last year as I've developed a fibroma (fibrous) lump on my perineal nerve in my leg which is causing pressure on the nerve and resulting in pain my ankle and lower shin. I've been referred to a neurologist and it looks as though it will have to be removed surgically, just waiting for next appointment for them to confirm action to be taken.
Thank you for the links Image

Susie I hope you can get your lump sorted soon without too much hassle and that all heals nicely. I've had quite a few lumps and bumps removed as I was diagnosed with malignant melanoma and I have dysplastic naevus syndrome so I've had multiple ops.

Hope all goes well with yours Image
hiya if you need to chat or ask for advice,,, im allways here....

My husband robert also has neurofibromatosis type 2. as well as kidney failure, which is on kidney dialysis 3 time a week,
would be lovelly to chat with anyone
tracie x Image
Hi I'm new to this forum but would love to chat to ther carers who are also dealing with nuerfibromas
Is anyone getting these messages
vicky Trousdell wrote:Is anyone getting these messages
Yes Vicky your posts are showing on the forum :)

Please note that the last reply to this particular topic was posted in May 2013 - it is likely that the original poster no longer visits the forum.

I have also replied to another of your posts to let you know that this forum does not have a live "chat room". Replies to your posts will depend on who is around the forum at the time you post.