Neurofibromatosis Support Group

NF affects everyone differntly, at age 19 I started to have seizures because of NF, My life changed drassticly, not everyone with NF will get epilepsy, some of loose hearing, I am starting to lose mine, my mother has alread lost all of hers in her left ear, Some of us will not have to make any changes, for others our life will change drasticly it all depends on how the disease will progress and nobody can tell us. Everyday is a challange and new beginning. This may sound korny and right out of the movie Forrest Gump. but for us "Live is like a Box of Choclate" We don't know! What to expect! I have learned to appreciate today and to make the most of it. Sorry I can not be of any more help to you.

Just curious, how did you hear about NF?

Were doing genetic diseases in biology and NF was the one I picked. it looked pretty different and that what i like to do with my reports. i get an animal report, ill do it on a skunk. i get an report on a president, ill pick one that noone will ver hear of. idk i think it sheds light on unusual topics ;)

I never had any issues with it until this last year, I had always had the spots but out of nowhere I started having crazy pain and other issues. I haven;t been able to work for a year, I have a few growths on my spinal cord between my shoulder blades and it has caused some loss of use of my left arm and hand...but somedays I am pretty good and others I can't get out of bed.

life was fine until i was 15 and developed severe pain while i started on the long road of schwannomatosis(nf tpye 3 ) my friends started univeristy , i eventually lost touch with them , then after a few years i was well enough to do a beauticians course i opened my own salon after an other op i lost the power and feeling in my arm/hand so i lost my business and career i now live in constant pain on morphine and other meds, i have a partner and child and a wonderful family and without their support i dont know what I'd do i always try to keep any negative feelings away from my daughter but it can be hard. the hardest can be to get doctors to understand what it's like, it's only now after 22 years that i got a blood test to officially diagnose what type i have i'm currently waiting the results but we know its schwannomatosis because i have so many (dozens ) tumors on my spine and 11 operations but no other symptoms . hope this helps if you want any other information you can email me on magsodywer@gmail.com.

NF has not really effected me very much other than being overly self concious sometimes.
I have a very mild case. I have lots of little bumps everywhere but as i have said before it does not define me.
I work out regularly and am in decent shape so I am lucky that it has not stopped me yet.
I do have some aches but that may be due to other reasons like overexerting myself over the years when I was training for bodybuilding.
I have seen a lot more bumps appear after my son, so I do not think i will have any more children.
We are all effected differently, but i will surely answer any questions!!

i've had tumors from the age of two months old so my lifestyle had no change.

I lost all vision in my left eye. it just means i have to be a little more cautious when doing things like driving. each person is affected so different, there really isn't a specific answer to your question. there really is no correlation between severity of teh disease and lifestyle changes... my case would likely fall in the moderate to mildly sever catagory, but i only need to be more cautious with visual circumstances. and someone who is mildly affected may require prescription medications for pain management or seizures. no two cases are exactly the same.

thanks for all the help guys and if you want to turn this into a chat but my report was from last year :P
i got a 95 btw
good luck everyone