Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body. Some cases may not require treatment other than careful observation. Other cases may require chemotherapy, radiation therapy, or surgery.

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  • I am a 47 yr female with NF1.  I have had a lot of struggles over the years. Just had spinal surgery in March to have a 3mm tumor removed from neck, had adrenal gland removed a few years ago, 5 surgeries upper right leg to remove tumors below and above skin on right leg over the years, left leg amputated at age 3 (pseudarthrosis) bone disease linked to NF, I have many,many small...
  • johnagonzalez

    varicose vein?

    I am getting a hard time with my leg . It was tingling throughout the previous 3 weeks and now it gets swelled and smolders dependably. While informing about my leave to my manager I just told about this and he said me that it might be Varicose vein issue. I don't know anything about this and I am terrified. Where would I be able to show signs of improvement treatment for this? While skimming I...
  • deleted_user

    NF1 and chronic back pain

    i have about 11 NF1 tumors up my spine and they are causing chronic pain, the doctors that i have gone to see are not sure how to remove them or treat them. please if you know of anything that could help me let me know
  • I've been having some problems with Dizzyness and loss of coordination on my left side we thought I wa possibly having Minnie strokes so I got in with my cardiologist and found out that was ok and he thought it could be something neurological so I got in with my neurologist and I'm setup to have an sleep deprived EEG on the 25th of this month and I find out the results on April 5th but I was just...
  • Hello,I noticed today when trying to perform a repair on a computer that I had quite a shake in my hands.This particular computer had a soldered in CMOS battery. When I was desoldering and soldering in the new one, I had a fair amount of shaking of my hands trying to hold the soldering iron and the solder sucker (which is a bulb that I have to squeeze to suck up the molten solder).It was a small...
  • Hello, Does anyone get the feeling like they are alone in this? I have no one that I know that deals with this disease. When I try and talk to my friends no one gets it and its hard. :(
  • For the past few months I've been trying to seek treatment. it took many years to finally pick up the courage and see a doctor. The only reason why i refused to see one is because i had a feeling that i was just going to be disappointed. it turns out i was right. I've seen about 5 Different doctors and took 2 MRI's within the last three months and still can't find one who is willing to do surgery...
  • aliciacoffman

    Help with pain

    Hi, I just started going to a pain clinic, Im on 400mg Gabapentin and 2 Percocet 10s a day. Over the past few months my pain has gotten worse, even before I started these. Its not doing much good. I can't do much of anything anymore, I hardly even leave my house. About a month ago I learned that the pain Im having is from my NF. I haven't researched NF in a long time and didn't know it caused...
  • terinhibl

    NF And Cancer

    Hello Everyone my name is Terin Hibl ive had NF all my life since birth and im a two time Cancer survivor from Breast Cancer in 2010 and in 2015 i had Neuroendrocine Carcinoma tumor of the small bowel luckly they caught it soon enough and remove it all i didnt have to have treatment but i love hleping others like thiis and being a mentor for Cancer Surivors and Survivors of NF so im on facebook...
  • pamelant

    Spinal Chord Stimulator

    Hi' I would like to know if anyone has tried this and how it reacted with their body regarding the NF aspect. I have NF and have known so all my life. The chord stimulator is for the pain caused by a spinal chord injury. I have a few hesitations of trying this but desperately want to stop taking so many meds. However I'm concerned how it might effect my NF.
  • itsherlife

    Baby girl with NF1

    Hi, I'm new here. Just a couple weeks ago, my husband (daughter's step-dad) and I found out that she has NF1. She is only 4 1/2 and has had some big obstacles to over come. We never had an explanation as to why these things were happening, but just recently met with a neurologist who has been in the field for 50+ yrs. He was able to answer so many questions we have. Our daughter has severe...
  • deleted_user

    How do I make him understand?

    Hello I am 35 years old. I have very mild NF1, had suregry a few years ago and got like 18 "bumps" removed from my chest and arms. I am in a relationship w\ a wonderful man for 2 years now....2 weeks ago we were talking marriage and just last week he pulls the rug out from under because he is no longer attracted me because of my "skin condition" as he called it, and that is why when we are...
  • mode101

    Just Joined

    Hi, I just joined this support group today, I've had NF 1 since birth. I have quite a few growths on my torso which didn't really start growing until early adulthood. I've had a dermatologist take some of them off, of course there's no guarantee they won't grow back. Other than that I try to live a relatively "normal" life although I can be a little socially awkward at times
  • HiIm a producer at a British television production company called Raw. We make award-winning documentaries for networks in the UK and US including Discovery, the BBC and National Geographic Channel. We are proud of our track record in producing sensitive programmes, recently following a group of young people living with mental health issues, in a programme for the UK's Channel 4. Please see our...
  • deleted_user

    Might as well be dead

    I have a large tumor right on the side of my nose. It makes me ugly and people tell me so. I'm 20 never even been on a date. Not to mention i have social anxiety. I have basically no friends in college, spend most of my free time alone in my room. I wonder why bother when i know im just going to get worse and no ones going to even higher a freak like me. i'll be 60 and never even had a kiss...