Neurofibromatosis

GaGa25

Hi

Hoping someone can advise me or help me out.

I am a sufferer of NF and I was wodnering if there is any other people who have the condition and what their experiences are.

If anyone can assist I'd be grateful..

Thanks

lily lou

Hi Ga Ga25
I have NF too, most of my problems are cosmetic I haven't been seriously affected but I have a lot of fibroma's and some of them look awful, I'm very paranoid about my body and appearance because of them, but I know I'm very lucky and that some people are in a lot of pain with their NF.
What type of problems do you have? I'd also love to know if there are any specialists in Ireland as any Dr I've been treated by hadn't much experience with the condition.

lily lou

Anyone else know anything about this? Would be great to hear from anyone who knows anything about NF.

Greenmachine

Another NF sufferer here again mostly cosmetic fibroma's and Cafe au lait spots. There are two main types OP NF1 and NF2 do you know which one you have. I have heard of a foundation dealing with the condition. I will see if I can find anything when I have more time.

lily lou

I have NF1. I guess my biggest worry is how it will affect any children I have as i've read that it can cause some degree of learning disability and also I know that I am mildly affected but this doesn't mean my children would be, I know it affects some people in a much more serious way.
There is an Irish association www.nfaireland.ie
Have you ever seen an NF specialist in Ireland or do you know of one?

Aishae

blimey... all the posts ive seen where people dont know if they have nf1 or 2 - as they havent been told by docs r it wasnt explained clearly. Thats not good. People need to know the lowdown.
I have NF2 myself

although both conditions can have features of the other, most scientists dont believe you can have both as they each affect a different geneand are distinct illnesses. nf2 affects the insides more and nf 1 affects the outside more... saying that.. some doctors have told patients (in the past) they have both nf1 and 2. my mother was one of them. then it gets confusing cos scientists are talking about a possible nf3. so its all pretty confusing.

lily lou

I have an appointment to get some of my larger lumps removed soon, my own Dr is querying whether I have NF at all, she doesn't seem to have been sent a diagnosis, but both my Mam and myself clearly remember being told I did have it.
I have a lot of very obvious lumps that I really hate but the hospital aren't keen to remove them all as they say they'll probably only grow back. Hopefully after the lumps are removed an analysed I will be able to talk to someone in the hospital a bit more about the condition as a lot of what I have read about it has scared the life out of me:(

Aishae

they can do tests to see if its defo nf you have - or thats how my mother was originally diagnosed and that was 26 years ago.

theres a lot of misinformation out there on it - online - some of the data is based on unsubstantiated 'facts' from decades ago when we knew less about nf.

i avoid the nf foums and boards as there is very much a sort of contest - maybe not intentional - but if one person tells their story or talks about a surgery there will be dozens of people outlining a worse case or experience. which doesnt help at all and probably scares the life out of others. i saw one lady on a forum who was looking for info on nf1 as her son had it and she saw what i mentioned above and basically ran away crying. its a shame because people with the same illness could be comforting to discuss experiences with. as well as that most of the people who DO post that stuff are the ones who have it worse - which is rarer. the people affected more mildly are usually scared off interacting at all.

ive had surface tumours taken away too - it seems the docs wont touch them unless theyre causing significant trouble or pain. so far none of my surface ones grew back and the one by my nose has been gone 8 or 9 years so far - touch wood.

lily lou

Thanks Aishae, you're right, I really should stay away from the nf forums, my sister has it too and hers is even milder than mine and I'm fairly sure that my Mam has it (from some skin lesions she has that she never noticed until I saw them) all of us are quite mild so hopefully it won't be a big problem when I have children.

I have a lesion that has grown back twice now, but it took over 10 years each time and I was told that as it was wrapped around a nerve that they couldn't get it all so that doesn't worry me too much either. It's the visible ones that bother me most and thats mostly for vanity reasons. I know there are people who have much worse problems than me so I try not to dwell on it too much:)