#Nf1

[king-ennui]

It's May again, and that means it's NF Awarness Month. If you can, take a little time to eductate yourself about the condition. Perhaps even donate to one of the NF charities such as Nerve Tumours UK or the Neurofibromatosis Network.

As someone with this condition, it would mean a lot to me if you helped spread some information. I'll make a more personal post about my experience living with the condition later.

💚💙

[nyxthewary]

Tired of being told i look "too Masc" to be in trans spaces. Tired of being ignored for being a amab non binary person who "isnt angrodyonisi enough". It makes me feel like shit cause I cant transition or my genetic disorder could kill me. My body is already fucked up. Im tired of life. I have friends i miss who ghost me or have a lot going on where they simply dont have the time (i dont fault them for that. Lifea hard) i miss my support network.

[neurofibromemetosis]

Is this a fibroma I feel underneath my skin or is nothing there and I'm just being paranoid?: An NF Autobiography

[aceoffangirls]

May is Neurofibromatosis (NF) awareness month

NF is a set of 3 complex genetic condition that causes benign tumours to grow on the body.

NF 1 is the most common effecting around 1 in 2500 (AU). It causes benign tumours known as neurofibromas, café-au-lait marks. These benign tumours can appear anywhere from the spinal cord, optic nerve, neck, arms, stomach etc. It can also cause learning disability’s. NF 1 extremely variable condition with some being able to live their life unaffected and others it could debilitating and in some cases life threatening.

NF 2 affects approximately 1 in every 25,000-40,000 people (AU). It is characterised by d by the development of tumours called vestibular schwannomas on the 8th cranial nerve. It can also lead to begin tumours on the brain and spinal cord.

Schwannomatosis is the rarest form of neurofibromatosis and has only recently been identified as a separate condition. It affects less than 1 in every 40,000 people and causes the development of tumours called schwannomas to form on nerves on the spine and other peripheral nerves.

I have NF1.

Information from

[chaoticwhenever]

I have only cried once today so I literally gave myself a gold star sticker because I deserve it. I have had at least one meltdown for a multitude of reasons this past month.

[clairebear1127]

It is neurofibromatosis awareness month and to see it discussed makes me so happy. I have met some people on line with it but I have never been lucky enough to know people irl that have it. It can be quite lonely being the only one that has a genetic disorder like mine. While I know my family loves me and would do anything for me they will never know how lonely it can be. For those curious I have neurofibromatosis type 1, but is a group of three genetic disorders causing the body to grow tumors on nerve endings.

[moonstruck-stormy]

This seems super misleading and is the reason why NF1 isn’t legally a disability…so what some folks don’t display symptoms? This was the only result that appeared in google last time I searched it (in a text box). Google search results are super misleading about medical stuff.

The truth apparently…why did I search this again I’m stressed even more now. Why are the search results different now? I’m very frustrated at google bc I tend to rely on the boxes bc NF1 gave me adhd among other things.

I know keeping a close eye on stuff is the only way to prevent this, but like with nf1 on all preexisting condition list I’ve seen republicans can take any sort of preventive care away.

Anyway back on topic: google get your stuff clear!

[kkthefrontbottoms]

Having a condition no one else in your family knows anything how is so fun because I can be having a problem so I’ll google the symptom followed by “nf1” and like 8/10 the results are like “yes that is indeed a symptom and also a consequence but we don’t know why!”

People with other disorders/ can rb and add your own experiences,

[cagedchangeling]

i was considering giving my twst yuusona nf1 cus i have nf1 but consider against it because i wasn’t planning to give her a lot of fibromas or any as i don’t have any well i didn’t…

i noticed it a few days ago because my palm/wrists was hurting (it doesn’t hurt anymore now) there’s just a bump at the base where my palm meets my wrist and i’m pretty sure it’s a fibroma.

“imposter syndrome over not having the fibromas that come with neurofibromatosis even though we’ve been diagnosed? we can fix that! have a fibroma!” - my body probably

some little memes? i made about my fibroma with the twst emotes

[ftxfagula]

NF and Transness! If everyone who sees this could reblog it that would be great.

I want to start a group for people, like myself, who are transgender and have neurofibromatosis. (Type one or two) There's very little research on if hrt and nf cause any complications. NF has complicated my relationship with my body as has transness. I want to get in touch with other people who might relate. So if the internet could help me find some other people like myself, that would be awesome!

[nurse-buckley]

Love it when Facebook brings up memories. 5 years ago today I got rid of that bitch ass tumour and my ear is still fucked. Thank you NF.

[king-ennui]

I really wish I could have top surgery, but financially, it's never gonna be an option for me. The right side of my chest is also heavily disfigured due to NF1. So, I would probably need a skin graft or other reconstruction surgery. That would push up the price a fair amount, I imagine.

For now, I'll keep binding. I've been doing that more often, and it makes me happier. I think I should get one or two more binders so I can rotate them out. I need to look into other brands. I have one from Spectrum and one from gc2b. The latter, a size to large, so replacing it with something more snug might be a good idea.

[nyxthewary]

Sure do feel ignored by the online queer community by being a amab non binary person. Who has to present masc, and probably cant transition.

[neurofibromemetosis]

[aceoffangirls]

NF AWARENESS DAY

Today Neurofibromatosis (NF) Awareness Day.

NF is a group of complex genetic conditions that cause tumours to form on the nerves throughout the body.

NF includes Neurofibromatosis type 1 (NF1), Neurofibromatosis Type 2 and Schwannomatosis.

[saturnw0lf]

Thinking Outloud (10/22/2023)

Being the sole NF-1 haver in the family is hard, because a lot of what I read about having it makes me doom spiral (the surgery for my neck back in February didn't help much in that regard)

It's also a relatively rare condition, so I haven't really met anyone else that has it, certainly not in any of my friend circles. It may also partially explain my learning difficulties, depression and anxiety, at least in part. If finding other people with it is hard, finding actual reliable support is even harder!

It's been a part of my life for as long as I can remember, I've been in and out of hospitals, getting MRIs basically annually for basically my whole life. (Well, there was a few years where I wasn't, and unless I can figure out a plan for when I age out of my parents insurance next year, maybe that'll be the case again) it's basically been all I've ever known

I would give anything for a cure to not be so covered in these damn things. It's so frustrating and scary it makes me want to cry