I have Neurofibromatosis dose any one have it?

I have Neurofibromatosis dose any one have it?
hi i am 18 and i have Neurofibromatosis. i think i have tipe 1 becuse i dont have it bad all i have is a lernig deasability, like 20 berth marks, really really smal bumps in random playses an i have had 2 tumers removd. i was wonderin if any one has Neurofibromatosis? and if so how bad or any good madicashon that helps?
Answer:
I have it, and I have type one. I have had a few tumors removed. One on my right arm, when I was like 16 or 17. And then this passed Nov. I had a few removed from my spinal cord, two were crushing against it and if they weren't removed and might have woken up one day and not able to move.I have a large mass on my right leg, that is too big too remove and it pretty painful, pain medication helps a little. I can't stand for long periods of time and sometimes one of my legs will give out, but the good thing is I haven't fallen yet. I have a good amount of those birthmark things, mostly on my legs.So I wouldn't say I have a mild case, my doc is pretty concerned about my leg. And want to get me on test medication once it become available.I learned I had NF type one when I was 15, I'll be 24 in a couple of weeks. I was probably fine the first couple of years after finding out and after that, it kind of all went down hill from there. I can't even enjoy swimming in our swimming pool the way I used to.
Hope that your NF, doesn't get any worse.

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I'm sorry, I don't have it. I hope you get well.

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whats Neurofibromatosis?

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nope, never heard of it, but it means something along the lines of brain fiber masses, that means theres tumors on your brain?

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i think my cousin has that ummm i don't think hers is that bad either. i don't no of any medication that can help sre .ask ur doc.good luck

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There is an organization that you might want to contact to locate support and find others with this disease:Neurofibromatosis, Inc. - national, tax-exempt, charitable organization whose mission is to create a community of support for those affected by NF through education, advocacy, coalitions, raising public awareness, and supporting research for treatments and a cure.
http://www.nfinc.org/NF Cure Project
http://nfcure.org/Best wishes to you.

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Had a couple of patients with it. No cure. You can live a long and healthy life. Problems occur when the tumors grow in dangerous places: spinal cord, lungs, etc. Surgery is an option if they compromise your way of life. Good luck.

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I do.Medication?? There's no cure for NF yet, unfortunatly.

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