#neurofibromatosis type 1

[adhd-chaos-queen]

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

[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

[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.

[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.

[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!

[transgenderprototype]

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

[eugeniedanglars]

i know this take is ice-cold and i know i've said it before but eponymous naming is the dumbest part of medicine and i'm so glad it's being phased out. what do you mean von recklinghausen's disease is a completely different condition than von recklinghausen's disease of bone. what do you mean there's a disease called gorlin syndrome that's characterized by jaw cysts and there's a type of jaw cyst called a gorlin cyst but they're not the type of cyst that you see in gorlin syndrome. fuck you

[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

[mrs-stans]

How Sebastian Stan and Adam Pearson got under each other’s skin for ‘A Different Man’

Adam Pearson and Sebastian Stan both know what it’s like to have people stare at them and be made to feel like they owe the public something.(Sean Dougherty / For The Times)

By Tim Grierson

When Adam Pearson was young, he rubbed elbows with celebrities. “I was at Great Ormond Street Children’s Hospital, one of the best pediatric institutes in the world,” he recalls of the London facility, “and they often had famous people come in to meet the kids. I met Boyzone, a big Irish boy band in the ’90s. The other one was Princess Diana.” The British actor was 5 when he was diagnosed with neurofibromatosis Type 1, a condition that resulted in the growth of large tumors across his face. Those tumors would often cause passersby to gawk cruelly, which made Pearson feel an unlikely kinship with the notable figures who stopped by the hospital. “I was like, ‘Oh, these people get the same staring and pointing I do, but people seem to like them.’ I wasn’t resentful, it was just an observation I made as a 12-year-old: ‘Oh, OK, that’s fascinating.’”

Decades later, Pearson, who turns 40 in January, is on a Zoom call from London alongside his co-star Sebastian Stan, beaming in from New York, to discuss their thought-provoking, satirical film “A Different Man,” which is all about appearance and perception. Writer-director Aaron Schimberg introduces us to Edward (Stan), a struggling actor with neurofibromatosis who believes he’ll be happier once he undergoes an experimental procedure that removes his tumors, revealing the sexy man underneath. Later walking around New York with a new identity — that of the slick real estate agent Guy — he discovers that the aspiring playwright he pined for, Ingrid (Renate Reinsve), has written a drama about his former self, who will be portrayed by Oswald (Pearson), a happy, charming man with neurofibromatosis. Guy looks on in horror as his old life is played with such flair by Oswald, who steals Ingrid away as well. Maybe it wasn’t his condition that had held him back — maybe it was just him.

Stan, 42, found two-time Oscar-nominated makeup artist Mike Marino to craft the realistic mask for Edward. But there was something even more important for Stan to get right. “I wanted to talk to Adam about how he was feeling about myself playing this part and having someone step into these shoes without neurofibromatosis,” he says. “Just really trying to be mindful and understand how I need to approach this so I can be of service to the character but also to somebody who actually has this condition.”

It was during those initial conversations that Pearson, who previously appeared in “Under the Skin” and starred in Schimberg’s 2018 drama “Chained for Life,” gave Stan, best known as the Winter Soldier in the Marvel Cinematic Universe, the insight that living with neurofibromatosis was not dissimilar to being famous. “They both come with certain levels of invasiveness,” Pearson explains. “You almost become public property. The public feels that you owe them something. So while Sebastian might not know the staring, the name-calling, the camera phones in a way I do, he certainly knows what it’s like to have people think [they] deserve to have a selfie with him.”

Sebastian Stan plays an actor with an ugliness inside, Adam Pearson plays the disfigured actor who is charming and confident, and Renate Reinsve is friend to them both. (Matt Infante/A24)

The absolute honesty between the two actors was crucial for a film that is candid about the stigmas around disfigurement. Schimberg, who became friends with Pearson during “Chained for Life,” also drew from his own experience with a cleft palate. “Aaron is such an incredible writer — he’s set up these things that rope you in as a viewer to judge Edward because of his appearance,” Stan says. “We project these stereotypical thoughts: ‘He’s lonely, somebody’s taken pity on him.’”

But with Oswald, “We haven’t made the connection yet that someone like Adam could actually be OK with themselves — and not only that, incredibly confident and accepting of themselves as they are.”

Indeed, “A Different Man” toys with our expectations, depicting Oswald as the life of the party, while the conventionally handsome Guy is riddled with insecurity. Unsurprisingly, Stan and Pearson have noticed that viewers sometimes don’t know what to make of Schimberg’s acerbic sense of humor.

“I’m always looking around to see what’s landing and what isn’t landing, because I’ve never had an audience react the same way,” Pearson says, amused. “Everyone finds different things either funny or uncomfortable.”

“The film asks very important questions in terms of disability and disfigurement,” adds Stan, “but we can also offer people permission to experience the film as they might. It is funny. Aaron Schimberg has said, ‘If you think this is a comedy, that’s fine — if you think this is a tragedy, that’s fine too. It’s both.’”

Much has been made of Stan’s recent so-called risk-taking performances, including in the Donald Trump biopic “The Apprentice.” (He won Berlin’s lead actor trophy for “A Different Man.”) “One of the reasons I’ve lately gravitated more toward what I’d call ‘transformational’ roles is because they do make it easier to lose yourself and to stay in it for the entire time,” suggests Stan, who lived in Romania and Vienna as a child. “I wanted to be an actor because it saved my life. I grew up in a very weird, chaotic time. I was always searching for identity — I came to this country when I was 12, and it was a shocking experience. Acting was a way of release and communication — it was a language, in a way, and it allowed me to understand myself.”

Pearson understands that sentiment. “There’s something inherently terrifying about putting yourself out there,” he says. “When I first got into TV when I was 25, one of my friends gave me what we now lovingly call ‘the talk of doom.’ He was like, ‘You are going to go on TV, and people watch TV — if they don’t like you, they will tell you on whatever platforms you are on. Do you think you can handle that?’”

He could, and his work in “A Different Man” has only raised his profile. Now he’s the one who’s a celebrity, although he acknowledges those old anxieties remain.

“Even now, my friends are like, ‘Aren’t you just a little bit scared that people are going to [not like you]?’ I’m like, ‘Yeah, I’m always scared,”’ Pearson says. “Option A is, ‘Don’t do it,’ and then Option B is, ‘Do it scared.’ And I’d rather do it scared than not do it at all.”

[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

[neurofibromemetosis]

[moonstruck-stormy]

You’re so right about how open doctors are to surgery! My dermatologist told me he had a lot of patients with my disorder have all their benign tumors removed surgically (even the little ones)(even if theres so many). I’m not doing that they’re just bumps I have to monitor. They are harmless! My mom tried removing the one on my face with drying liquid (it was for acne if I recall correctly it’s been a decade) and I was in pain for weeks. I’ve gotten medical suggestions to correct my disorder-caused scoliosis (minor), but it corrected itself with exercise. It’s like an obsession with “fixing” someone or something? So what I’m not perfect? I’m not dying! If I was in pain or in danger I’d ask for surgery, but like I feel like being suggested to intervene when it’s not hurting me is strange.

I still find it amusing when I was diagnosed with scoliosis a few years back (13 degree curvature, nothing major) and they phoned us with like. Suggestions of surgery and stuff???

Like...bruh I'm not getting **spinal surgery** over a minor thing with currently very few life effects, are you out of your mind????

[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.

[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?

.

[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.