I own Neurofibromatosis dose any one enjoy it?
hi i am 18 and i have Neurofibromatosis. i suppose i have tipe 1 becuse i dont own it bad adjectives i have is a lernig deasability, similar to 20 berth marks, really really smal bumps within random playses an i enjoy had 2 tumers removd. i be wonderin if any one has Neurofibromatosis? and if so how bleak or any good madicashon that help?
Answer:
I have it, and I own type one. I have have a few tumors removed. One on my right arm, when I was similar to 16 or 17. And then this passed Nov. I have a few removed from my spinal cord, two were crushing against it and if they weren't removed and might own woken up one day and not competent to move.
I have a full-size mass on my right leg, that is too big too remove and it pretty scratchy, pain medication help a little. I can't stand for long period of time and sometimes one of my legs will give out, but the perfect thing is I haven't fall yet. I enjoy a good amount of those birthmark things, mostly on my legs.
So I wouldn't influence I have a mild crust, my doc is pretty concerned about my leg. And want to take me on test medication once it become available.
I bookish I had NF type one when I be 15, I'll be 24 in a couple of weeks. I be probably fine the first couple of years after finding out and after that, it kind of adjectives went down mount from there. I can't even relish swimming in our swimming pool the path I used to.
Hope that your NF, doesn't get any worse.
I'm sorry, I don't enjoy it. I hope you get all right.
whats Neurofibromatosis?
nope, never heard of it, but it ability something along the lines of brain fiber masses, that finances theres tumors on your brain?
i think my cousin have that ummm i don't think hers is that discouraging either. i don't no of any medication that can assist sre .ask ur doc.
good luck
There is an foundation that you might want to contact to locate support and find others with this disease:
Neurofibromatosis, Inc. - national, tax-exempt, charitable shop whose mission is to create a community of support for those affected by NF through lessons, 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.
Had a couple of patients near it. No cure. You can live a long and healthy duration. Problems occur when the tumors grow surrounded by dangerous places: spinal cord, lungs, etc. Surgery is an prospect if they compromise your way of natural life. Good luck.
I do.
Medication?? There's no cure for NF yet, unfortunatly.
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