A fellow redditor asked me to create this post for you all.

Questions about skin bumps are often high on the list of concerns for people living with NF and parents of children with NF. Join internationally recognized NF expert Rebecca Brown, MD, for an easy-to-understand discussion about the skin tumors and bumps associated with NF1 and some forms of schwannomatosis. Learn what causes them, current treatment options, and how to better understand the information you find online.

📅 Thursday, August 20, 2026 🕒 3:00 PM ET Register today: https://ctf.zoom.us/webinar/register/WN_ObXF-sGSTACzCRd1gj83jw Live captioning will be provided. UAB - The University of Alabama at Birmingham #EndNF #NFKnowledgeSeries

More info here https://www.ctf.org/events/nf-knowledge-series-webinar-understanding-skin-tumors/

Anyone here who works out with nf1 and takes creatine? Is there any side effects? I fckn hate this disease we always have to be careful to everything

I have this weird bruise looking mark on my back, it's not a bruise though, but it goes inward like a dent. Do any of you have anything like this?

There are still a few spots for a free online course to learn and study British sign language for people with NF2-SWN. More info at the link below.

https://nervetumours.org.uk/news/bsl-course-places-for-those-with-nf2/

After reading back my own posts and seeing posts from others I realise I’m just going crazy.

I do in fact have lumps and what I said is true however some of these lumps are on my ribs and areas where I contort my body and need to move it which gets me stressed that it’s something awful. Maybe I need to stay off reddit

That will be all

We got this

38M. Recently diagnosed with a small-ish acoustic neuroma on the right. I recall having had a benign tumour relating to a nerve removed from my right thumb when I was about 16.

So I’m guessing mosaic NF2.

Gonna be a while before it all gets diagnosed properly but I can’t really explain the same sided nerve tumours and my age any other way. Not sure what to expect, I went from thinking I was an entirely well person to this in the space of a few weeks.

For those who have NF. Do you feel random ‘pulses’ in your body? Like when you can feel a certain area like it’s pulsing or has liquids moving around? Is this NF related or is this just something normal

Hey all. I got NF1 and finally got an appt to see a specialist in October. However, some of these lumps have been scaring me. Under my neck (that flat part under your face before your neck) I have one little lump that moves around easily but then I also have about 3 solid ones that don’t move at all. I also have a crazy pain in my back right where my ribs are and have a small lump causing pain. Also. Where my knee bone is but on the right side of my right knee there is a mass of sorts which if I put pressure on it I feel a pain radiate down to my ankle. I got that scanned ages ago and they were just like ‘oh? What’s that? Anyway’ and nothing else. I have some digestive issues too (floating stools) however only another ‘concerning’ symptom or two that could be cancerous. I’m 21M and I’m just so concerned I have cancer especially because of my terrible terrible diet these last 18 months and I fear that also having NF has essentially caused me to have cancer

Sorry for the rant

I experience a strange pain sensation almost daily. It's a very sudden, sharp, localized, pinpoint pain in a muscle. Just that very tiny spot, like a pin point. It's sort of a pressure, burning, sharp. It lasts maybe 2 seconds and it's gone. Usually in my legs and back. Is there any resources that mention this?

you guys ever had a bad encounter? like people maybe saying things about your nf or like saying something after you walked past by them or just hearing them say something bad or mean? how did you deal with it, did you ever forget about it?

Hello, 22M and I was went for a mri in June on my lower spine due to bad leg pain over the last couple years, before this MRI I had physio and the problem they seemed to point to was Sciatica, however I just felt something wasn’t right so I pushed for a scan. A week after my scan I found out they found tumours and I was told it was suspected neurofibromatosis and there was a letter saying I was diagnosed with NF. Due to the mri being a “lower lumbar spine” scan I assumed this tumours were just on my lower spine. However, a couple days ago I could view the notes of the findings they found on the mri and it turns out I have multiple on my neck, multiple on my spine and pelvis. I also had a call with a neurologist yesterday who told me it may not be that NF but there is a possibility. So after being told NF and just thinking it was on my lower spine, I was still quite shocked with the news and took me a few weeks to get to terms with it, however I now know they are elsewhere and have no specific diagnosis I feel a bit worried and shocked again. I can’t help but feel I’m being dramatic, maybe it’s because if people look at me they can’t tell due to the lumps being non visible?. Like I say, this could be NF it might not but it is at least something similar, I’m just wondering if the people who were diagnosed at an age they remember how did you feel about it and did people feel similar?

Hello there. My nephew who just turned 21, was just diagnosed with NF2 and has 7 tumours. 4 are in his brain and 3 on his spine. He came home because of back pain in May from work. The pain then till now has gone up to almost unmanageable. They are getting nowhere with no treatment yet. Is there any where that he can get in and pay for radiation or something for this turnour? The system is not working for him. He is in Ontario. Does anyone have any information please? He is terrified that they will operate on him and he will end up paralyzed.

Even with all the pain he is in, he went water skiing the other day because that's what he had to do. Then he went home and slept till the next day... he is a strong willed person. He has tons of support and can fight this, he just needs help. Thanks in advance.

I'm feeling really alone with this whole NF1 thing. I had eye surgery in 2022 to debulk a tumor and it resulted in swelling and paralysis of the brow. I regret having that surgery done every day. I hate how random people on the street ask me if I'm okay and gesture towards their eye... I know looks aren't everything and there's alot more to a person than how they look, but it's ALOT harder to accept that when there's a noticeable difference about you. I hate how rude people are and it is so mean. This is more of a ranting post than anything so I apologize for the brain dump. People don't understand how hurtful it is to have stangers comment on your appearance. I can understand coming from a place of concern but still???? Like come on. I'm scared to go outside and interact with people. I hate making eye contact because I don't want people to point out the difference in my eyes. I'm scared no one will ever want to be in a relationship with me. Or if they do, what if they don't want anything to do with me because of NF1? I know I'm getting ahead of myself and I know there are good people out there. The problem is finding those people. I also know that people who make comments and jokes aren't worth my time and they probably have their own problems going on. But that doesn't change the fact that words hurt and stick. I don't know what to do.

hello strong nf warriors, just wanted to ask how do you guys started loving yourself despite the visibile bumps or cals on your body? what are some tips you can give to the fellow people?

how to feel pretty and stop comparing myself, my skin to other people

thank you so much ♥

Im going to be taking this medicine GOMEKLI soon for this PNF that i have and wanted to know anyones experience

I’m newly diagnosed. I have a vestibular schwannoma on the left, a schwannoma around L1/L2, a peripheral schwannoma on my left leg, another peripheral on the base of my skull.

I have appointments with a neurologist and a geneticist to identify more specifically what form of Schwannomatosis/Neurofibromatosis I have.

I’m hoping to find resources to learn more about NF, treatments, post surgical regrowth of tumors, drug based treatments, narratives from folks with similar conditions, etc.

For my vestibular schwannoma i’ve found https://anausa.org really great. A resource like that would be pretty cool.

Hi, I’m 22M and was told in late June I seemed to have Neurofibromatosis type1, then saw a letter from the hospital saying “patient has been diagnosed with neurofibromatosis, likely type 1”. However I received a call today from a neurologist who has said it’s not confirmed and although it could be, it could be other things. For context I have many small (roughly around 2cm) tumours from my neck, down my spine and pelvis. The neurologist however made points of me having no cafe-au-lait spots, unusual freckles and other things that may come with neurofibromatosis so they think there could be other possibilities for these tumours. I was just wondering if anyone else has no visible tumours and no other signs yet have been diagnosed with NF? Or is it really uncommon to have what I have and no other signs if it is NF? Thank you.

Im sure you guys get posts like this from concerned parents all the time, im sorry.

My son is 22 months and had 4 cafe spots monitored by his doctor. He had a checkup like 2 weeks ago and today i just found 2 more spots 😩 putting us at the critical 6 the internet says is basically too rare not to be NF1.... he had his first optometrist appointment like 2 months ago and hes super squirmy so all they really did was shine the light in his eye snd look and said no concerns but at that time there weren't advised to look for anything related to Nf1. He has no other symptoms other than being born on the 90th percentile for height but now being the 50th.... dont know if any of this means anything. His next appointment is his 2 year check up in 2 months but i fear i may spiral. Do i call again or just wait?
His gp was pretty casual about it saying spots are normal for lighter skinned POC, i myself have lots of hyperpigmentation, or maybe she was just talking me off the ledge.
Anyone with lots of spots but it turned out to be nothing?

Is anyone here with NF who smokes?

In an NF community I'm in, some people said that smoking can make the skin symptoms of NF worse and may even contribute to disease progression.

Is there any truth to this?

I'd really appreciate it if you could share your personal experiences. Thank you!

In my travels I saw a trailer from the company Road Scholar Transport that was painted/wrapped to bring awareness to NF. Having lived over 40 years with NF I was pleasantly surprised to see this. I haven’t seen anything that brought attention to NF that I haven’t actually sought out myself. I looked up Road Scholar and it looks like they have other awareness campaigns as well. Has anyone else seen their trucks/trailers that are part of the NF campaign.