#neurofibromatosis type 1

[adamaramma]

This isn’t going to me one of my normal posts, and it’ll probably get pretty personal, so keep that in mind.

But… today (May 1st) officially marks the start of NF Awareness Month!!! I had no idea that this was a thing until last month, so I’m really happy that I can celebrate it and educate others on what NF is YIPPEE.

So, ‘NF’ stands for ‘Neurofibromatosis’ which is a group of rare genetic disorders characterised by the growth of benign (non-cancerous) tumours (called neurofibromas) on nerves in the body. They can grow anywhere, like on or under the skin, or deeper within the body on muscles, organs, or other tissues. They can even grow on the brain, spinal cord, and spine. There are different types of Neurofibromatosis, like Type 1, type 2, and Schwannomatosis, although the last two are less common than NF1 (Neurofibromatosis type 1).

Neurofibromatosis is not contagious, so you can’t ‘catch’ it, as it is a genetic disorder and can only affect the individual who has it. It is caused by a mutation in the neurofibromin gene which helps to supress tumours by regulating cells and preventing them from growing and dividing too rapidly.

Approximately 1 out of 2 people who have NF inherit it from one of their parents. If somebody with NF has a child, there is a 50% chance that the child will also have the same mutation in the neurofibromin gene. The other half of people who have NF is due to a spontaneous change in the gene and is unrelated to their parents. This is also the category that I fall in.

There is currently no cure available for NF, but research is happening every single day to find ways to shrink the neurofibromas or stop them from growing completely. Currently, the only way to get rid of the neurofibromas is to surgically remove them, which is what I have done.

If anyone has any questions, and can anonymously drop them in my ask box, I would be more than happy to answer them! 💙💚

(You can visit this website if you want to know more :33)

[adhd-chaos-queen]

I'm a bunch of issues in a trenchcoat and I really don't like the way that said trenchcoat looks...

[daebreaker1]

Practicing an interpretive dance to remind my boss I have da tumors (Neurofibromatosis Type 1) and standing that long is literally agony.

Curse you plexiform Neurofibroma in my leg the platypusssssss!

[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.

[nurse-buckley]

Trying to connect with some more people with neurofibromatosis and or hydrocephalus. I’m trying to set up a little project and could use some advice from others with the conditions.

[nights-nonsensical-ramblings]

hmmm I’m not sure if I’m noticing more splotches cuz they’ve been on my mind lately or if I’m actually getting more. Cuz a lot of the newer ones I’ve spotted are either a slight shade darker than the surrounding skin smaller than my fingernail in some odd spot I have to twist to see or some combination of the three

[aceoffangirls]

Is it a pimple, insect bit, a random lump or fibroma…

A follow up Autobiography

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

[transgenderprototype]

Not a fan of the idea that my constant headaches are potentially due to a fucking tumor

[adamaramma]

guys guys guys guys I had no idea this was a thing until like last week, but apparently May is NF Awareness Month and I am so happy that it's a thing because what????

[aceoffangirls]

When your disability isn't classified as a disability because it can affects people in different various ways. When people with it will have almost no effects and all while others are extremely affected. When it can be both visible and invisible at the same time. When your disability can also lead to things such as an increased chance of being neurodivergent, mental health issues, physically disabilities, learning disabilities, non-cancerous tumors, cancerous tumors but people with the same condition can not be affected at all or if so very limited. But you also don't know how it may effect you since you don't know what it would be like without it.

It is really confusing.

Welcome to Neurofibromatosis

"low support needs disabled people are often not believed to have a disability at all and therefore struggle to get accommodations."

"high support needs disabled people's accommodations are often seen as 'too much' and therefore are not met."

"neurodivergent people's needs are often dismissed because nothing is physically wrong with them."

"physically disabled people people often cannot physically access buildings and people refuse to do anything about it."

"invisibly disabled people are seen as lazy by society."

"visibly disabled people are ostracized from society."

IT'S ALMOST LIKE THERE'S NO SUCH THING AS A SOCIALLY ACCEPTABLE DISABILITY

[adhd-chaos-queen]

You know what sucks about having a rare ilness/genetic condition?

(aside from the obvious of course)

But...

Doctors visits..

You go to a regular doctor, and you're the first person with that condition they've ever seen.

Sure, they've heard about it, but it was only a side note during their medical studies...

And then you go to a specialist and you're just "one of many"

Last time the specialist said my case was "not that bad" and basically implied that I had no real reason to be there.

That really sucked.

Yes, It could be worse, but I still have my struggles, and I just want to talk about it.

To be understood.

I have never met another person with that condition.

Makes me feel like an alien.

Too much for a regular doctor.

Not enough for the specialist.

I hate it

[i-need-some-advice-on]

body image and medical stuff (sorta)

I was born with NF1 (Neurofibromatosis type 1) and one of the conditions is that I have alot of mental issues plus ones with my body. I was born much shorter and with a larger head than most kids and now as I'm much older I'm having issues with my weight. I'm currently on birth control and a larger amount of anti anxiety meds for a long time, and unfortunately they also make it much, much easier to gain weight. I'm currently in the obese category and while i hate it, I've also tried to loose weight. Diet, exercise, I swear nothing is working. I don't eat out, I skip meals, and while I don't go to the gym everyday (work and school) I try to move more. I don't know what to do anymore. I wish I had enough money for surgery but I'm broke. Please, what can I do?

.

[iconicloneliness]

Out of curiosity, what would deadpool be like in you disabled mutants au? As he does cannonly have a few mental disabilities

So sorry it took so long! Oops Wade has ADHD, Bipolar Disorder, Schizophrenia, Borderline Personality Disorder, PTSD, God Complex, Body Dismorphia, Nihilistic behavior, Psychosis, he has liver cancer but they caught it way earlier and he is going through chemo - he has already lost his hair. He is very hyperkinetic for sure. He also has Neurofibromatosis Type 1, but his skin only has the café-au-lait spots and no visible tumors. There's probably more, but he doesn't actually talk about himself that often, despite having a god complex

[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.

[smokesforharris]

These losers running the US government cut the CDMRP (Congressionally Directed Medical Research Program) by 57%.

32 diseases lost research funding through this cut.

One is NF (A group of genetic diseases that cause tumors to grow in the nervous system -Neurofibromatosis Type 1, and multiple types of Schwannomatosis including NF2-related schwannomatosis which used to be called Neurofibromatosis Type 2)

The NFRP (NF Research Program) is completely gone.

They think that 25 million dollars a year is too much to spend on researching brain, spine, and skin tumors.

For reference, they have spent more than that since Jan 20th so that the orange shitbag could go golfing on his own property

[pangirlpanic]

Hey y’all, I know this is a bit different from my normal content, but please. If you have time to spare, listen. This could save a life.

I was just mindlessly scrolling through TikTok, when a certain account caught my attention.

It is a woman and her son, but her son has a unique and potentially deadly condition if it is not treated properly and soon. Her son’s name is Amare, and he has Neurofibromatosis Type 1.

This is a genetic condition that causes tumors to grow throughout his body, and they are the most severe on his face. These tumors are unfortunately impacting his ability to see and to breathe, and surgery is needed to help him.

This is his mother’s account. If you have TikTok, please go follow her and share with anyone who you know.

They’re only 36% at their goal, and they need $120,000 total to pay for Amare’s lifesaving surgery.

Here is the link to Kandice’s linktree — please go donate if you can!!!

Amare is only 13 years old, and he deserves to have a childhood just like everyone else. I have already donated, and I hope anyone who sees this will too or will be willing to share.

Thank you for listening. 🫶