#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.

💚💙

#nf1 #neurofibromatosis #awarness #nf2 #schwannomatosis #charity #mental health #physical health #disability

[neurofibromemetosis]

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

#nf #nf1 #nf2 #neurofibromatosis #neurofibromatosis type 1 #neurofibromatosis type 2 #schwannomatosis #genetic disorders

[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

#neurofibromatosis #nf #nf1 #nf2 #schwannomatosis #children’s tumor foundation #awereness #may is NF awerness month #neurofibromatosis type 1 #neurofibromatosis type 2

[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.

#neurofibromatosis #nf1 #autistic adult #sensory problems #mental illness #I just want validation #chronic pain #chronic illness #it’s so hard to have to explain my entire genetic disorder to every new medical professional I see #I’m so thankful my boss is understanding

[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.

#neurofibromatosis #neurofibromatosis type 1 #nf1

[nyxthewary]

Sucks that its only March and I:

Experienced a friends suicide

Need money

Had galbladder surgery

Blew my knee out/may need my 21st knee surgery

Cousin is in ICU.

Liver is being fucky

Need 2 brain scans.

Im tired

#nf1 #chronic illness #neurofibromatosis

[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!

#cw medical #nf1 #neurofibromatosis #cw vent #disability #it’s ok to add things on I feel a lot of folks are frustrated with google #cw death

[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

#nf1 #neurofibromatosis #twst yuusona #yuusona #twisted wonderland #my yuusona isn’t even really a self insert i just thought it’d be nice to give an oc my condition #twst wonderland #disney twisted wonderland

[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,

#kktfb talks #neurofibromatosis #nf1

[sweetpeauserboxes]

[id: a light green userbox with a pastel green border and pastel green text that reads “this user has nf1.” on the left is an image a blue and green ribbon. /end id]

#nf1 #soft aesthetic #soft userboxes #soft userbox #softcore #soft #cutecore #cute aesthetic #cute userbox #cute userboxes #cute #pastel aesthetic #pastel userbox #pastel userboxes #pastelcore #pastel #userboxes #userbox

[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!

#neurofibromatosis #nf1 community #nf1 #nf2 #trans gender #trans community #please reblog

[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.

#queer #nonbinary #non binary #top surgery #nf1 #neurofibromatosis #chest binding

[neurofibromemetosis]

#nf #nf1 #nf2 #neurofibromatosis #neurofibromatosis type 1 #neurofibromatosis type 2 #schwannomatosis #genetic disorders #nf memes

[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.

#neurofibromatosis awareness #nf1 #neurofibromatosis type 1 #neurofibromatosis type 2 #neurofibromatosis #schwannomatosis #awareness #nf awareness

[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

#NF1 #NF-1 #neurofibromatosis #rambling #personal #thinking outloud

[marlinsandthetrout]

About Neurofibromitosis

Hi. I’m Pepper. I’m a 20-something and I have a genetic disorder called Nf1, or Neurofibromitosis type 1. What the hell is neurofibromitosis? I’ll tell you! There are 3 different types, but I will be covering Nf1 only. So, cells naturally like to divide and replicate, right? That’s what they do. 6th grade biology 101. But obviously, cells dividing and replicating everywhere unmitigated would be a bad thing, because that’s how you get tumors, cancers, etc. So. Your body has a gene, called the Nf1 gene, that produces a chemical called neurofibromin. Neurofibromin is a tumor-inhibitor. So your body basically has a natural gene that says “no tumors”. My body does’t have that gene! So my body says “yes tumors”!!! Which means that my body spontaneously grows thousands of tiny tumors wherever and whenever it wants. For this reason I joke that Nf1 is Yes Tumors Disease.

Some of these tumors are about the size of a pea or a pinhead and some are only a little bigger than this period . They might resemble a skin tag or a pimple. Those are called cutaneous neurofibromas, and they grow anywhere on the surface of the skin. They do not go away once they’re there, and there aren’t a lot of options to have them removed. But some of them are more of what you might think of as a traditional tumor - fleshy, large masses that grow and become deeply enmeshed in the nerves, and can become cancerous. These are called plexiform tumors and they can grow anywhere, including the face. I have three of them; I had surgeries to remove two of them that were not successful, and the third isn’t at the size or rate of growth where I’d be considering surgery yet, especially given that it’s on my neck and it would be a complicated surgery. Brain tumors are common with Nf1 too; I myself have a stable brain tumor, an optic glioma, so I need to get annual or biannual MRIs for... the rest of my life, essentially, to make sure that tumor doesn’t grow and new ones don’t appear.

Tumor growth is related to hormones, and one may go through periods of their life where no tumors grow, followed by periods of their life where tumors grow extremely frequently. I didn’t get a single neurofibroma until I was 22, but now that I’m in my mid-20s I have to check my body nearly daily to keep track of when and where new ones are showing up.

Nf1 affects every organ and system in the body and comes with a host of other symptoms, including bone deformities, learning disabilities, and problems with vision. It is the most common genetic disorder in humans, affecting about 1 in 2500 people. It’s autosomnal dominant, meaning a patient with Nf1 has a 50% chance of passing the condition onto their child, if their partner does not have Nf1. If their partner also has Nf1, it’s a 100% chance. For this reason, I have made the personal decision not to carry a child.

One of the main ways that Nf1 affects me (other than the tumors, duh, which absolutely suck) is scoliosis. I developed severe scoliosis at the age of 6 and needed to have back surgery at Johns Hopkins by the age of 8, to fuse my spine with metal rods and screws so it wouldn’t continue to curve. I then had surgery to fuse additional vertebrae at age 12, and a surgery at 22 to replace hardware that had cracked. I’m fused T2-T12, all but one of my thoracic vertabrae, so half of my spine does not bend. I physically cannot slouch. I set off metal detectors everywhere and I always get patted down by TSA. I have ramrod straight posture with no effort put in, which is sometimes a plus! Spinal fusions are common in Nf1 patients and the more vertebrae are fused, the less mobility you have. I am lucky that I am still able to twist and bend, though I can’t touch my toes and I’m supposed to squat instead of bending over.

Here’s a Johns Hopkins page where you can learn more :) Though please ask me any questions if you’re curious! I love getting to talk to people about my disorder and I don’t find questions offensive. Nf1 is a fascinating condition. And if you have nf1, please reach out to me! I’ve never had a friend with my disorder and it’s an unimaginably lonely feeling

#Nf1 #neurofibromitosis