#nf1

[sugarthebee]

this was really fun to draw

[disability-shout-outs]

Shout out to folks with Neurofibromatosis Type 1!

[adamaramma]

NF1 stuff.

Hey,

I just had a tumor removed from just under my skin on my chest, and they ran tests and turns out it's from NF1. What puzzled the skin doctor and my PCP is how it took this long (I am 42) for this to show up.

I have little bumps all over me which I thought were skin tags that I started developing a few years ago. I have the cafe spots, which I remember having all my life. There are around 6.. and all the little spots too.

When the skin doctor wanted to look under my arms she turned white.. seeing the cafe spots too and looked under my arms. No one figured it out until now, and I'm kind of dump founded. I see a specialist soon.

My PCP wonders how it went thing long unnoticed and wonders if it's because I could be a chimera(ate my twin in the womb). All of it is so very confusing, but reading about NF1.. so many things are adding up.

I read puberty and hormones can make nf1 act up. I transitioned from female to male, (post everything and pass) but the time line of the tumors and all that don't add up. I started HRT in 2011, and the tumor on my chest didn't show up until 2023... so I don't believe T make it flair up. I'm just deeply confused and very scared. I had a cancer scare in 2023 where they found a large tumor on my rectum, and no idea what it was, and turned out to be benign.. dunno if it was a neurofibroma (I can't remember). So the possibility of the stealth nerve cancers is scaring the shit out of me. Sorry I'm just rambling here I just feel alone and scared.

Hi! I'm honestly a little shocked someone sent an ask about Nf1 as I didn’t really expect anyone to, but I’m so happy you did! :)

I just wanted to say that I am so sorry about what has happened. It feels absolutely devastating to have this huge medical result  revealed to you out of nowhere.

I’ve had signs and symptoms of NF1 since I was really young, so I rarely even realise that I actually have the condition because of how much it is a part of me.

I’ve had a few surgeries to debulk and remove some neurofibromas, the most prominent ones being a plexiform neurofibroma and another that was growing on my spine. It took a while to accept how I looked (especially as a teenage girl haha), although I’m still not as confident I can be in my body sometimes.

There’s a Tumblr Community I joined recently for people with Neurofibromatosis, and even though there aren’t many people, it’s nice to talk about it with others.

I honestly feel like I’m rambling too cause there are still things that I have no clue about and I’m still figuring out who I am lol. But I hope I at least made you feel a little less alone, because there are so many other people that are going through the same thing :)

[202crowqueen]

I saw the concept art last June and so excited it’s past prototype stage and coming soon it’s so freaking cute

[a-heart-full-of-song]

nf1 fact! people with nf1 have a greater chance of dying from cancer

[nyxthewary]

Im tired of being tired. Im tired of hurting. Im tired of not getting the care i need because of where I live and my insurence. Im tired of not being able to transition and getting gender euphoria only through art and VR chat. Im tired of my trip to visit my Gf keeps getting pushed back. Im _fucking tired_ my disability has no cure. It gets worse. I dont see irl friends much anymore cause i cant drive.... and they say the ride to see me is too long..... at this point its whatever... im use to it. But i feel like im being dragged down to the bottom of the sea by a ancor ill never get off.

[bloodslurppingbutterfly]

Twst Neurofibromas type 1 memes i made a year or so ago when i developed my first fibroma.

note: i posted these on an art account back then on a different account but have since privated that post.

[aceoffangirls]

Happy NF awareness month to all my fellow baddies with Neurofibromatosis.

For those not aware NF is a group of genetic conditions including Neurofibromatosis Type 1 (NF1), Neurofibromatosis-2 related-schwannomatosis (NF2) and schwannomatosis (SWN). NF1 is one of the most common rare genetic conditions. NF1 which I have effects 1 in 2500 people, NF2 1 in 25000 people and SWN is 1 in 70,000.

NF affects everyone differently and to different levels.

To learn more about NF:

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Neurofibromatosis

Neurofibromatosis is a manageable genetic condition characterised by benign tumours. Learn more about its symptoms, diagnosis and treatment