I Have Neurofibromatosis Type 1

A Neurofibromatosis Type 1 anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Neurofibromatosis Type 1. You're not alone. 70 People

    I guess I have had NF

    since I was born. Not sure when the fibromas first appeared. Doctors were stumped and we were just left in limbo. I we were not to concerned, well mom worried about "those bumps". In 1979 I was at Shands Clinic University of Florida for my epilepsy. This tall guy with a thick...
    Scott1954 Scott1954
    61-65, M
    1 Response Jan 12, 2015

    I Have Neurofiromatosis Type 1

    I found out I had NF1 when I was pregnant in my 3rd trimester (2010).. All these tumors (moles) just popped on my body. Both underneath and above my skin.. Some of them did manage to shrink down a bit after I gave birth.. But I did get a lot more appear on my body with this...
    mrsannban mrsannban
    31-35, F
    Nov 27, 2013


    "Life! What is Life? Life is all around us, life is in the trees, in the birds..." That's the only line I can remember from my speech I delivered in school when I was 11yrs old. I can still remember the day I stood up in front of the class & read it out, i remember not feeling 10...
    SiennaRain SiennaRain
    26-30, F
    2 Responses Dec 2, 2013

    My Tumors

    Iam 35 1/2 and i have nf1 and i have a 5 1/2 year old that has it also. I have many tumors in my body some are going to be removed some arnt. I get really bad headaches sometimes because i have two that are in my head.Iam coverd with skin tabs. and the coffola spots. I didnt...
    supermom36 supermom36
    Sep 24, 2012


    I have NF type 1 NO ONE in my family has NF. my 3 kids dont even have it. Somehow I am the only one withon my family that has it, and no one knows why. I also have seizers due to my NF. It has caused many problems but nothing I cant handle so far.s@
    Kandis75 Kandis75
    May 23, 2012

    I Have Nf 1 Too

    Well, this is something that I was born with and honestly, for the most part, am actually unaware of until someone else mentions it. Usually they ask about the eye, or occasionally they will stare, but for the most part, most people really do not make an issue of it. Think about...
    wpcooper wpcooper
    41-45, M
    Jul 25, 2012

    Just Me

    I was born with NF1. In my case it was not inherited at all. i am 23 years old and have had 14 surgeries. my right ankle is fused due to many extented uses of the illizarov. Also it caused a tumor in my left eye.
    321shorty 321shorty
    Oct 2, 2012

    I Have Nf Type 1 Also

    My father passed NF down to my brother and myself and my brother passed NF down to his son. I have one child but did not pass it down. My dad is the only one who shows signs of NF between his brothers and sisters but his real father might have it. I have had problems in school...
    littlema07 littlema07
    26-30, F
    Nov 12, 2012

    Girl With Neurofibromatosis Type 1

    It was known that I had Neurofibromatosis 1 since the first few weeks of my life, and I am almost 20 years old now. My mother has NF 1 as well and it is believed it started with her. Still, our two cases are quite different. My mother has a few café-au-lait spots but her skin is...
    Cindifer12 Cindifer12
    1 Response Nov 21, 2012


    I am 58 years old, i have had visible signs of NF since I was young; maybe puberty or younger. I was diagnosed when I was when I was about 25. Due to my life long epilepsy I was seeing for first time, a neuro at University of FL. My former neuro did not know what my fibroma were...
    sfrancisk sfrancisk
    61-65, M
    Nov 1, 2012

    My Life With NF

    I was very young with I was diagnosed with NF. I inherited it from my dad. My brother, aunt and my grandfather also have neurofibromatosis. Growing up knowing, I was not the only one with the disease in my family, I know I was not alone. I am 21 now and do not has a sever...
    fragoash fragoash
    22-25, F
    Oct 18, 2013


    hi there iam gareth iam 26 and iam from the uk i have nerofibromatosis type 1 in augtust of this year i had a fibroma removed from the right side of my head it the first majour one i have had removed and iam amazed with the results the sergion done a under ther hair line cut to...
    gazanf1 gazanf1
    26-30, M
    Dec 14, 2012

    I Have It Too

    Yeah, I have it, got through my mom's side of the family. My brother has it, my daughter has it and my son has it. I hate it but I wouldn't wish it on my worst enemy. If I had known about it before I started a family I would never done it. I know that there are different degrees...
    deleted deleted
    Mar 12, 2011


    I found out I had NF1 when I was 8 years old, my father also has it,my youngest son has it as well, I have had tumors removed,and multiple surgeries on the right tibia my father has so many neurofibroma's you can not set a finger between them in some places. I have done some...
    asundermom asundermom
    31-35, F
    1 Response Oct 25, 2011

    Life With Nf1

    I am in my mid thrirtys with a child that has nf1. He got it from me,no one in my family has this and i dont understand why i do. When i was a teenager i had back surgray to fix my spin. I have the spots all over me and i have two brain tumors. i have skin tabs on my body and i...
    momandsonnf1 momandsonnf1
    31-35, F
    Oct 1, 2012

    My Name Is Unusual And So Is My Disease I Am Veda And I Have Nf1

    i am 35 years old now but i was only 2 when i was diagnosed with nf1. I also have pseudoarthrosis of the right tibia.that is how my nf1 was discovered. i had a bone marrow transplant at 3 years old. i was my own donor.they took the bone marrow from left hip and put it into my...
    veda74vester veda74vester
    31-35, F
    3 Responses Sep 10, 2010

    Diagnosed As A Child

    I was diagnosed with nf1 as a child due to the number of cafe au lait spots. All my life I have been waiting for a tumor or bump to show up and so far I have been blessed only to be afflicted by the spots. I feel for those who have had both physical and psychological pain from...
    4four2twenty0 4four2twenty0
    22-25, F
    3 Responses Apr 7, 2010

    I Need Someone To Talk To Who Has Had Surgery To Remove Tumors From Their Spine. I Need Support. I'm Scared.

    I was diagnosed at birth with NF1. You all know what it is. I'm 21. And I've only been to the doctor once to have an MRI. They called for me to come in and have another one to "clear something up". I have so many of them on my body, mostly internal. I've had one removed, because...
    DeenZeeS DeenZeeS
    18-21, F
    2 Responses Dec 20, 2012

    I Have Nf1

    I am the only one in my family with NF and have had it since the age of 7,over the year it has gotten worse with the pain. If I did have Jesus in my life I don't know what I would do. I give these cards I made up when people ask about my condition. I have Neurofibromatosis (NF) a...
    quieebaby quieebaby
    1 Response Oct 2, 2012

    Recently Diagnosed

    I was diagnosed with NF1 just this summer after having an odd liesion under my breast biopsied. It turns out this was a non-cancerous tumor, a neurofibroma and that along with several cafe au lait spots (which I have had since childhood) freckling around my armpits and an eye...
    LadyEvenstar LadyEvenstar
    31-35, F
    3 Responses Feb 3, 2011

    i was 2 months premature

    and i am the 1st one in my family to have NF. when i was young i did't really think about it a lot even though i had to go to the doctor a lot. know i think about it a lot and am having trouble trusting God that it'll be ok. i have an brain tumor on the cross of my optic...
    carapisciotta carapisciotta
    16-17, F
    Jan 28, 2016

    Neurofibromatosis On TV

    So it seems like t.v shows take an interest in Neurofibromatosis, this is like the second or third t.v show within the last few years that have mentioned it, I have NF 1 so I am surprised each time I see it on tv.
    coolju001 coolju001
    18-21, M
    1 Response Feb 4, 2013

    I Nf-1 As well

    I inherited this from my father. I have tumors on the inside of my body on every single nerve in my body and my spinal nerves. I had a major decompression operation in my neck. A C2-C3 fusion, C4,C5,C6,C7 laminectomy. I had mild nerve damage, I'm functioning at a level C5...
    Randy030 Randy030
    31-35, M
    3 Responses Feb 12, 2012

    or in other words Café au lait spot (giraffe

    spots) Neurofibromatosis is the most common genetic neurological disorder that is caused by a single gene. It affects more than 100,000 a condition characterized by changes in skin coloring (pigmentation) and the growth of tumors along nerves in the skin, brain, and other parts...
    Lauren4life Lauren4life
    18-21, F
    1 Response May 26, 2014
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