I Have Neurofibromatosis

Neurofibromatosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Neurofibromatosis. You're not alone. 92 People


    I was wondering what the difference between type 1 and type 2 are? I have 1) I have a curve spine 2) My right shoulder blade is more sticking out than the other one 3) I have a bump above my right ear. Does anyone else have any of these.
    deleted deleted
    2 Responses Dec 1, 2011

    Curious And Sad :/

    I had the little bitrth mark spots since i was little. It never bothered me because most are under my clothes or very tiny like freckles. I am 19 now and have a few of the fibromatosis. I kinda always knew something about NF but since ive been doing research i get very scared and...
    blondebeauty123 blondebeauty123
    22-25, F
    4 Responses Sep 30, 2013

    27 Nf2 Tumors On Optic Nerves

    Hi my name is Ryan; I have had NF2 since I was born. As a result I was left with tumors on the optic nerves of my eyes, which in turn cause severe pain and constant bruising around the exterior of them. My whole life I have had problems fitting in. Most people seemed to only keep...
    ryan1685 ryan1685
    26-30, M
    Jun 15, 2012

    My Nf Story.

    I was diagnosed with it when I was really young, I don't exactly remember the age. I have NF-1 which mean I have cafe-au-lait spots on my body, huge ones in fact. I have one that takes up half of my back. Also, along with the many spots I have a asymmetric jaw. The crook jaw is...
    Bree1211 Bree1211
    18-21, F
    5 Responses Mar 11, 2011

    My Beautiful Daughter

    When Christina was born I always knew there would be a 50% chance she would have the same disorder as myself.  At birth she seemed perfect. I knew no matter what I would love this little girl and give her all the love that was possible. At three months she started to develope...
    bclincoln2007 bclincoln2007
    1 Response Jan 31, 2012

    My Experience With Nf

        At the age of 4 a dermatologist did a biopsy and diagnosed me with neurofibromatosis. I don't know my biological father and the disease didn't come from my mother's side of the family. Although I knew about the diagnosis, my mother didn't really tell me much about the...
    hazelrose76 hazelrose76
    31-35, F
    Sep 28, 2011

    I am 23 years old.I have neurofibromatosis

    and i am dark and ugly I am from India where people usually associate dark skinned people to be ugly. I was diagnosed with neurofibromatosis when i was 9 but never understood the complexity and inferiority associated with till i was 14.I also had suffered a stroke when i was a...
    nash90 nash90
    26-30, M
    2 Responses Aug 20, 2014


    When I was young, I often dreamt or hoped for a romantic relationship, marriage with someone I love. As I grew older, I realised I am different from friends. It didn't really affect me at first with few freckles appearing. But later on, it worsened, I have freckles on my neck...
    earthling17 earthling17
    2 Responses Jan 16, 2012

    Hi I Have Nf

    I was dionosed with nf when I was 2 months old. I have a tumor behind my left eye. On my optic. Nerve, I always had back. Problems. Assessts on my lower back, I. Also have a bump on my right arm. I can't. Comprend at some time. I can not lift. Any heavy stuff. Do y'all go...
    samant2289 samant2289
    22-25, F
    1 Response Mar 6, 2012

    Any Advice Pls

    hi every1 im so glad i found this page. Could really do with some guidance. my daughter who is now nearly 13 months is currently waiting for an appointment with a geneticist. It all started when my daughter was 4 weeks old when we discovered a lump on the bridge of her nose so...
    sam1craven sam1craven
    26-30, F
    1 Response Aug 17, 2012

    I have a somewhat mild case.

    how ever I have had complications due to NF.
    meanameicallmyself2 meanameicallmyself2
    36-40, M
    Apr 22, 2015

    I Said No From Being Discriminated Because Of Nf1

    On 3rd March 2009  Red Cross and National Social Security  Fund  organised  blood donation week  for the blood bank  where there was a general shortage of blood  in  our area and the country at large. Annoucements were run on the local...
    bintubyensi bintubyensi
    Sep 22, 2010

    NF Type 1

    My name is Rebecca, and i was diagnosed with neurofibromatosis type 1 when i was about 5 years old. I am currently 15, and i have had 3 plexiform nueros surgically removed do to my disorder. 2 in the past 6 months and one when i was 6, the one that lead to my diagnosis. I hope to...
    becca1807 becca1807
    22-25, F
    1 Response Mar 12, 2013

    Neurofibromatosis The Story

    We threw a blanket over the Neurofibromatosis, and avoided it as much as possible, but my brother however could not do that. He was diagnosed with an Optic Glioma at the age of 5, and in 1975, doctors didn't know much about this disease, and had treated the tumor with radiation...
    nagh nagh
    1 Response Dec 19, 2012

    I Have Nf1

    I have NF1. I didn't found out until I was 15. It is very hard for me to find friends. I fell alone and useless.
    poohbear32 poohbear32
    31-35, F
    Apr 12, 2012

    My Husband

    I was married to a man for twenty years that loved the bottle more than his family.  Some 20 years later I see things in a totally different way than I did back then.  At the time I was in a living hell.  My whole life centered around my husband's drinking.  Every happy event...
    bclincoln2007 bclincoln2007
    1 Response Feb 3, 2012

    My Brother

    HI, i am writing because my brother has neurofibromatosis, he didn't get lumps till he was about 19. they say it is inherited but i dont believe it, no one has EVER had it in our families history. when my mom was married to my first dad, he use to hit my brother every time he...
    prayer72003 prayer72003
    61-65, F
    Oct 2, 2012

    Why Me

    Ok so here it goes....I am 30 years old and since I can remember I have had Nf. my mother does too. I have a wonderful husband and 3 daughters, one may have it too. My husband says he doesn't care but it worries me. Right now I just have a few big birth marks and very few random...
    loopsie30 loopsie30
    Dec 26, 2012

    Things Out Of My Control

    I watch these stories all the time about these remarkable people who decide to go on diets and get their old bodies back.  It does take so much work and determination of their parts. I wish I had a solution to my NF.  With a lot of hard work it all would go away. All the ugly...
    bclincoln2007 bclincoln2007
    1 Response Feb 2, 2012

    Im 16 I've had nf since I can remember

    and I've had self conscious problems because of it and I just wanted to hear other peoples stories who know what its like..
    jazz333 jazz333
    18-21, F
    Aug 27, 2014

    Long Walk With Nf1

    Its been a long  walk for me with NF1.My dream was becoming a teacher but all this was shuttered because of  NF1 .I was rejected on registration because my facial nodules and deformed leg,i do always remember  the words of the registrar ...
    bintubyensi bintubyensi
    Sep 21, 2010

    I was diagnosed when I was 6.

    When I was 8 my right ankle basically broke on its own. I have had 13 operations on it since then the last being an open reduction. I have tumors growing more every day My first was on the back of my neck, when I was a teen I had one removed from my left foot. . My dad has so...
    FordFamily FordFamily
    1 Response Dec 20, 2014

    Nf Is Well Errr....

    I am one of 7 in my hosehold. My younger sister was diagnosed with NF at birth. I had it and my younger brother as well but at that ime the docs were either ignorant nor did they seem to look more to us for possible problems. I had emotional difficulties, eyesight and headaches...
    honey624 honey624
    56-60, M
    Mar 24, 2011

    I Have Nf Type 1

    I was diagnosed with NF type 1 at age 3 when at first my parents thought I had a lazy eye, the doctor at first just told my parents "oh she has tumors dont worry about it" then told us it was NF type 1. i have tumors all through my body but the ones that affect me the most are...
    jedouril jedouril
    18-21, F
    2 Responses Apr 16, 2011


    I was diagnosed with NF 1 when since birth and I am now 18. Over the fast 6 years I had a few surgeries done on my back and 2 more to go. One of the surgeries required me to have a hole done it my back that was nicely covered by a muscles that as flipped from one side of the...
    poiter445 poiter445
    22-25, M
    Sep 2, 2013

    Growing To Accept Yourself

    iv allways hated having nf it makes me feel sick hearing people go on about loosing weight i think all you need to do is stop scoffing your fat face,id give anything to be just fat and not full of scars,lumps and brown marks,just to have plaine boring skin,id love to be confident...
    monkey1244 monkey1244
    Sep 2, 2012

    My Grandfather

    My grandfather did not have an easy life. He was born in 1892.  His mother died when he was just thirteen and his father two years later. After the death of his parents he worked on horse farms in the Hutchinson Kansas area.  From boyhood he was always interested in sports and...
    bclincoln2007 bclincoln2007
    Jan 31, 2012

    Words I Will Never Hear

    I was the first in my family to have NF.  Everyone else is among "the beautiful people."  This past weekend my nephew was here from Oklahoma City and everyone said how handsome he was.  I wish just once someone would give me a compliment.  I know I will never be beautiful...
    bclincoln2007 bclincoln2007
    4 Responses Feb 1, 2012

    Here'S My Story

    Im 33 and I never knew I had NF till after I gave birth to my son. Not only have NF1, I also have scoliosis. The doctors I've seen and even the dermatologist said it was nothing. I had this all my life. Now that the doctor told me that my son show symptoms of NF1. I've been in an...
    UniqueEm UniqueEm
    31-35, F
    Feb 21, 2013

    I Love Change

    From the age of 18 I have loved change.  Would want to move about every six months.  I thought with change came happiness.  When I was single and there was such a thing as being able to rent a furnished apartment I loved moving. Every thing I had would fit into one car load...
    bclincoln2007 bclincoln2007
    Feb 1, 2012

    I Found Out That I Have Nf

    millisaaddicott millisaaddicott
    1 Response Dec 23, 2010

    I Live With Neurofibromatosis

     I  was born 45years ago with neurofibromatosis which the Doctors didnt know at time i went through many surgery trying to remove the nodules  but more will emerge until in 1976 when i was refered to Nairobi Hospital in Kenya that found out the condition and...
    bintubyensi bintubyensi
    2 Responses Sep 15, 2010

    How I Feel

    So i have nf2 and i got to the point were i dont like being touched becuse it eratates my nerves and so i mostly stay at home and play xbox360 becuse i dont like the way i look becuse my teeth are decaed and the fibromas i any one wants to hang out on xbox messege me so even with...
    Lamonkeyking Lamonkeyking
    18-21, M
    1 Response Sep 21, 2012

    64 Year Old With Neurofibromatosis

    My story is no different than any one else's who suffers from this disorder. I did not know I had NF until I was 21. I have had no health problems with my NF only the cosmetic ones.  I am not really good at dealing with my NF and NF and I will never be friends. At times I feel...
    bclincoln2007 bclincoln2007
    Jan 29, 2012

    Living With NF

    My name is candace and I have nf type 1. I also have twin daughters and one of them also has it. Living with nf is not easy and sometimes I feel like an outsider in the world. I work in fast food and recently had a customer complain abouy my lesions. They said it looked like I...
    candyapple84 candyapple84
    31-35, F
    Sep 1, 2013

    This Is My Story

    hi i m 26 and i just got diagnost with neurofibromatosis  4 months ago,and a had 2 suergery ( left uper arm and me back) i juste had mri of my left leg because i had so much pain than they find out that i have another one on my leg,next week im going to a surgen to find out...
    sunshinelife sunshinelife
    26-30, F
    1 Response May 4, 2011

    Thriving With Nf

      I grew up knowing about Neurofibromatosis.  I knew it affected my older brother.  I also knew that my mother was affected, but we were never to ask about it.  The bumps on my mothers abdomen, were just her "bumps".  Any further discussion...
    NFMommy NFMommy
    36-40, F
    4 Responses Sep 23, 2009

    Things That Changed My Faith

    Growing up and going to a catholic school I always wanted to be a nun.  For three summers I would go and spend a week with the nuns at a convent close to where we lived.  I loved to sing in choir and would sing as loud as I could.  Thinking the louder I would sing the more God...
    bclincoln2007 bclincoln2007
    Feb 18, 2012

    Growing Stronger With Neurofibromatosis

    Today sunday19th the sermon in my church was to be gratefull in every situation we find ourselves,about  amonth ago when i started searching the net on neurofibromatosis  i was horrified by the photos of those who are greatly affected and realized thats what i will be...
    bintubyensi bintubyensi
    1 Response Sep 19, 2010

    My Life With Nf

    I was diagnosed with NF when i was 3 years old. I have a learning disability because of the medical condition. I guess it could be worse, i could have the other physical issues that tend to go along with NF.  I am happily married to a great guy who accepts me for me. I...
    rebecca2 rebecca2
    26-30, F
    Aug 10, 2009

    My Time With Nf1

    when i was at the age of 4 or 5 i had this lump on my right hand me an my family went to the doctor the doctor said it was a sist they gave me yucky medication 4 weeks later it was getting bigger and bigger my mum got mad and was yelling at the doctors they said go to a peration...
    mikeylovertmnt mikeylovertmnt
    18-21, F
    Jul 19, 2013

    My Story

    Hi my name is tamekka. I'm 25 & I've had neurofibromtosis type 1 since birth.. I always had daily migraines an pain since I was little. I even started my period at four years old. I had to take shots to stop it of course. I have three brain tumors I'm blind n one eye an only have...
    tamekka tamekka
    26-30, F
    Aug 29, 2013
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