#Neurofibromatosis

[feelingthemode]

disability pride month userboxes part 3/5

posted these on insta throughout the month :3

[gayaest]

Friendly Fire for @/2c4ub (or @/saszor on Artfight) 🩷🫶

[filmap]

A Different Man Aaron Schimberg. 2024

Abraham Lincoln Soldiers' and Sailors' Monument, Riverside Dr, W 89th St, New York, NY 10024, USA See in map

See in imdb

Bonus: also in this location

[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

[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.

💚💙

[gayafmermaid]

Go Fund Me for my mom's neck surgery

[nyxthewary]

On my bullshit today 🤙🏻.

[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!

[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.

[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

[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

[king-ennui]

So this morning, I had an appointment with an NF1 specialist from Guys Hospital. I spoke about how I'm struggling with my disfigurement on my chest/breast. I have a very large plexifribroma, which has always caused distress, but I just tried to ignore it. That's not helping, though, and it's ultimately making my mental health worse.

I'm also having some mild pain in the plexifribroma on my scalp. I have some bone thinning in that area to so I'm gonna get that checked out asap.

The doctor agreed and is going to make a face to face appointment. There will be a physical examp and possibly an MRI. After that we'll make a choice about what to do next. After that, I might possibly have a talk with a plastic surgeon. I have spoken about reconstructive surgery before when they last removed a lump but I honestly felt like such a bother I avoided it. I need to stop doing that. :(