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What sort of neurofibromotosis do u have ?
- By Shaaz85 · New reply 6:40 am
- Discussion in Living with NF1 · 11 replies
- Hmmmm wel am new here.. I am a neourofibromotosis suffrer too.. My Condition is were tiny lumps grow all over my body and they slowly grow bigger I have so many on my body that I have lost count .. Mainly ...
Glomus Tumors
- By hopeful109 · New reply 5:42 am
- Discussion in Off-Topic · 1 reply
- Well not only do i live with the pain from the tumors I was diagnosed with Fibromyalgia this past Monday :( Not sure how much more physical pain my body and even my mind can take or handle. Still cannot ...
PLEASE HELP ME!!!
- By Piano4500 · New reply 3:30 am
- Discussion in Newly diagnosed with NF1 · 7 replies
- For as long as I can remember, I have had freckles under my left armpit, and about or at least 6 CAL spots, which I identify as birthmarks. I decide to google freckles under armpit, and suddenly I find ...
sad today
- By dotqueen · New reply 2:28 am
- Discussion in Living with NF1 · 1 reply
- Hi...Today I went to the mall looking for fashionable tops that are 3/4 sleeves. I love clothes...but I could not find anything nice that I could wear in warm weather.... Most of my bumps are now on my ...
surgary
- By AmberMarie88 · New reply 1:49 am
- Discussion in Living with NF1 · 2 replies
- ok everyone i had a question if i ever get surgary to get a tumor removed do i ahve to pay out of pocket ...
11 year old Canadian girl looking for similar girl
- By bdabee · New reply 12:58 am
- Discussion in Living with NF1 · 4 replies
- Hi, my daughter lives in Kitchener, Ontario , she is blind in her Lt eye from glioma and has a speech delay. I am looking for a girl approx same age with NF1 that she could meet up with and chat ...
Sensory Processing Disorder
- By N1C0SMOM · New reply yesterday at 11:04 pm
- Discussion in NF1 and children · 13 replies
- I would like to know the different levels of SPD that people are dealing with. I am investigating it for my 3 year old right now and I believe he has this, would love to hear other stories and situations ...
Scared and concern
- By lilcarol79 · New reply yesterday at 9:37 pm
- Discussion in NF1 and pregnancy · 6 replies
- Hi my name is carol I'm 33 years old and have NF 1 I found out I have NF maybe when I was about 10 because of all the birthmarks I have all over which they do look like birthmark. I have a beautiful lil ...
seems to be getting worse
- By stitcher · New reply yesterday at 9:34 pm
- Discussion in Living with NF1 · 10 replies
- My NF seems to be getting worse,, I discovered another small red bump and a blimish (like the cafe' a) spots,small kinda of? well I don't know how to describe it,, It seems I'm getting more and more bumps ...
I don't understand life...
- By KristinaMarie23 · New reply yesterday at 9:18 pm
- Journal · 22 replies
- Okay I don't get it I really don't Im so sick of been different from everybody else.. I'm sick of looking at my self and seeing all these fucking marks I'm sick of looking like a weirdo I can't wear nothing ...
Sometimes Sick of NF
- By iluvpickles · New reply yesterday at 8:38 pm
- Discussion in Living with NF1 · 11 replies
- As the only one in my entire family tree dealing with NF1 for so long (16 years; diagnosed at age 5), I've become pretty annoyed by it. Don't get me wrong, I'm blessed to be alive and I live like I don't ...
Vitamin D and sunlight. Please tell me your experiences/ or explain.
- By Skittles84 · New reply yesterday at 7:57 pm
- Discussion in Living with NF1 · 2 replies
- Ok, so I have heard that being in the sunlight can make the dermal tumors grow more. My question is...how is that so if they grow from the inside? Also I have heard that vitamin D is good for you and ...
NF
- By Ninikins · New reply yesterday at 4:29 pm
- Journal · 2 replies
- I discovered that I had NF when I was 16. I am now 28. I have a lot of birthmarks. I also have quite a few bumps on my legs.They look like bruises but are not. Some are raised and some are internal and ...
NF walk uk
Recovering from neurofibroma removal
- By rachey · New reply yesterday at 1:04 pm
- Journal · 3 replies
- My first journal entry :) Currently recovering from an op last Friday to remove two neurofibromas from the sole of my foot, one from my stomach and two from my breast. On crutches and keep thinking I ...
Do anyone ever feels weird sensations...
- By susie7 · New reply yesterday at 12:57 pm
- Discussion in Living with NF1 · 3 replies
- usually it hard for me to describe when i am feelings things.. like with the right wording to explain myself on the things i feel.. anyways. does anyone ever feel weird senatins like achy or dull pain ...
Help (:
- By rhiannonw · New reply yesterday at 12:53 pm
- Discussion in Living with NF1 · 4 replies
- Any one from England whould like me to set up NF walk ...
Nf walk uk ?
EYE SIGHT
- By NF1DIVA1978 · New reply yesterday at 11:30 am
- Discussion in Living with NF1 · 16 replies
- DOES ANYBODY HAVE OR HAS HAD TROUBLE WITH THEIR VISION I NOTICED MY LEFT EYE IS ALWAYS IRRITATED AND THE VISION IS NOT AS GOOD AS THE RIGHT EYE AM I ALONE IN THIS ...
Blood pressure medication side effects
- By GirlA · New reply yesterday at 11:17 am
- Discussion in Living with NF1 · 4 replies
- I was recently put on a blood pressure medication and it is giving me all kinds of side effects including nausea, dizziness, weakness, loss of energy, and weight gain and bloating. If anything my blood ...
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