#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]

Meet the makeup wizard who transformed Sebastian Stan into ‘A Different Man’

By Josh Rottenberg

At the tender age of 5, Mike Marino saw “The Elephant Man” for the first time and his life was forever changed. When David Lynch’s haunting and heartbreaking story of the disfigured John Merrick would air on HBO in the early 1980s, Marino found himself horrified but unable to look away, sparking a fascination with prosthetics that would eventually lead him to becoming one of Hollywood’s top makeup artists.

“I was so afraid of it, but little did I know how beautiful that story was and how much of an imprint it would leave on my brain and soul,” says Marino, 47, who earned consecutive Oscar nominations in 2022 and 2023 for his makeup work on “Coming 2 America” and “The Batman,” the latter starring a totally transformed Colin Farrell. “If it wasn’t for that film, I wouldn’t be doing what I’m doing.”

But for actor, TV presenter and disability rights advocate Adam Pearson, Lynch’s film took on a more painful role in his life. Growing up in England with neurofibromatosis type 1, a rare genetic disorder that causes tumors to grow on his face, Pearson was often taunted by classmates who cruelly called him “Elephant Man” and other names. As he got older, he saw how movies routinely depicted people with disfigurements as freaks, villains or victims, stripping away their humanity. “There’s an element of laziness to it,” says Pearson, 39. “How do we show this character is evil? Let’s slap a scar on them.”

Now, through a twist of fate, the lives of Marino and Pearson have intersected on a very different project: the darkly funny, mind-bending psychological thriller “A Different Man.” Directed by Aaron Schimberg, the A24 film stars Sebastian Stan as Edward, a shy, disfigured actor working in New York City who undergoes an experimental procedure to transform his appearance, only to find himself losing the role he was born to play — himself — to a cheerful, outgoing man named Oswald with his same facial deformity, played by Pearson. Renate Reinsve (“The Worst Person in the World”) co-stars as a playwright whose latest work brings Edward’s identity crisis to a head.

“A Different Man,” which The Times called “a self-deconstructing meta-pretzel of a dark comedy” following its debut at this year’s Sundance Film Festival, tackles complex themes of identity, beauty and disability with a blend of Charlie Kaufman-esque surrealism and David Cronenbergian body horror. Along with Stan’s performance, Marino’s meticulously crafted prosthetics are key to bringing Edward and his inner agonies to life, reflecting the deeper emotional anguish of a man trying to escape his own skin.

“The movie portrays how the shell of who we are should not dictate our spirit and our personality,” Marino says. “I think it’s a very important film, much like ‘The Elephant Man’ was.”

When Schimberg first wrote the script, inspired by his own struggles with a cleft palate and his experience working with Pearson on his 2019 satire “Chained for Life,” he initially had no idea how he would actually pull off the film’s demanding prosthetics work. “I was sort of blissfully ignorant,” says Schimberg. “After Sebastian came aboard, we started cobbling the film together very quickly. It was only about a month before shooting that I realized this film was going to completely fall apart if we didn’t get this right. It was very down to the wire.”

Signing on as an executive producer for the film, Stan asked around about makeup artists in the New York area who could handle such a difficult job under that kind of time pressure. One answer consistently came back: “Literally everyone, hands down, was like, ‘You’ve got to get Marino,’ ” the actor recalls.

Though he was already busy with a job on “The Marvelous Mrs. Maisel,” Marino, who has done his share of more fantastical creatures, leapt at the challenge of re-creating a real-life disfigurement like Pearson’s. “I’m fascinated with people that have something going on with their skin because it’s just the most interesting, artistic, natural thing,” Marino says. “For me, there’s an amazing beauty to how Adam looks. This was not about a scary face or a monstrous person. I don’t like to do things like that with no soul or purpose.”

Marino’s passion for makeup and prosthetics took root early in life, inspired by industry legends like Dick Smith (“The Exorcist”) and Rick Baker (“An American Werewolf in London”). Growing up in New York, Marino started honing his skills as a preteen by practicing on his friends with latex, foam and various chemicals, destroying his bedroom rug in the process, to the chagrin of his parents. While still in high school, he mailed his portfolio to Smith and received encouragement and advice by phone from the makeup legend, who won an Oscar in 1985 for “Amadeus” and earned an honorary Academy Award for his life’s work in 2012. “Once he acknowledged me, it was like, OK, this is serious. There was no stopping me.”

After cutting his teeth on “Saturday Night Live” and “Buffy the Vampire Slayer,” Marino broke into film with the 2007 psychological thriller “Anamorph” and quickly became known for his versatility, seamlessly switching between fantasy creatures and more subtle, realistic applications. His work on Darren Aronofsky’s “Black Swan” amplified the film’s psychological horror, while on Martin Scorsese’s “The Irishman,” he enhanced the film’s digital de-aging of Robert De Niro and Al Pacino with carefully crafted prosthetics.

Outside of film, Marino created the Weeknd’s plastic-surgery-gone-wrong look for the singer’s “Save Your Tears” video. “It’s all problems to solve,” Marino says. “There is no playbook.”

Diving into “A Different Man,” Marino used photographs and 3D scans of Pearson’s face, which has undergone some 40 surgeries over the years, as the basis for a multi-piece silicone prosthetic that would work with Stan’s features. “There was no way I could completely replicate Adam’s exact proportions,” he says. “I had to make some aesthetic choices.”

While the makeup work in “The Elephant Man” benefited from that film’s grainy black-and-white cinematography, the prosthetics in “A Different Man” had to withstand more unforgiving scrutiny. To put his Edward face to the test, Stan would walk from Marino’s makeup chair to the set through the streets of New York and crowds of strangers, giving him tremendous insight into how people treat those who look different.

“I went to my old coffee shop and the same barista who’d served me for years couldn’t identify me,” Stan recalls. “I got to really feel people’s reactions in real time. There were people who couldn’t even look at me, other people were staring and sometimes you’d get a bigger reaction, like, ‘Oh s—, it’s the Elephant Man!’ As Adam puts it, you feel like public property.”

Pearson, who shares his character’s sunny gregariousness, encouraged Stan to think about it like he does with his own experience as a movie star. “I was like, ‘You don’t know the level of invasion I get with people pointing, staring and taking photos, but you do understand a very similar thing from this angle, so lean into that heavily,’ ” he says. “ ‘And if it makes you uncomfortable, lean into it further.’ ”

While wearing the prosthetics, Stan could only see out of one eye and had limited hearing in one ear, challenges that helped further inform his performance as a man who has learned to shy away from potential threats and insults. “Edward is a character that has had to endure a lot of emotional abuse and probably some physical abuse, so he is probably always on his left foot a little bit in case something happens,” Stan says.

As Edward’s face changes following his radical treatment, Marino made additional prosthetics showing the transition, including an “extremely soft, mushy version” that, in a particularly Cronenbergian scene, Stan could pull off in chunks.

Colin Farrell as Oswald Cobblepot in “The Batman,” work for which Marino was Oscar-nominated. (Warner Bros. Pictures)

Marino’s talent for transforming stars is on full display in Farrell’s hulking, thuggish look as the Penguin in 2022’s “The Batman” and the new HBO spinoff series. “When Colin saw the sculpture I made, ideas started exploding,” Marino says. “Once we did a makeup test, it was magical — he knew how to speak, how to walk and he was already the guy.”

Marino, who is preparing to make his directorial debut based on a script he wrote set in the 1980s (“It’s deliberately not effects-heavy,” he hints), has lost none of his passion for the transformative power of latex and silicone since the days he was obsessively poring through issues of Cinefex magazine as a teenager. “If you think of Michelangelo showing beauty 500 years ago in painting and sculpture, I’m still showing that same beauty but in this new hyper-realistic way, in silicone,” says Marino, who named his makeup effects studio Prosthetic Renaissance. “It’s a very unique art. It’s like moving sculptures and paintings all at once.”

As for Pearson, if he were offered an experimental treatment to change his face, like in “A Different Man,” he says he wouldn’t take it. Despite the challenges it has brought him, Pearson believes his face has shaped the life he leads today.

“I joke with my friends that my disability does a lot of heavy lifting for my appalling personality,” he says with a laugh. “Everyone thinks it’s hard to go from non-disabled to disabled but I think the other way around would be even harder. The path we walk and the struggles we go through make us who we are and they’re inseparable from one another.”

[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.