#nf1 community

[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!

[aceoffangirls]

MAY 17th is Neurofibromatosis Awareness Day

May 17th is international awareness day for a condition called Neurofibromatosis or NF. NF is a set of three complex genetic conditions that can cause tumours to grow on the brain, spinal cord, and nerves. Although most tumours are benign some can be cancerous. People with NF can also struggle with learning and attention disabilities, bone deformities, hearing loss (those with NF2 due to tumours), vision loss (NF1 optic nerve tumours) and chronic pain.

I have NF.

NF1 is one of the most common genetic conditions yet it is widely unheard of both within and outside of the medical community.

Buildings across the world will be lighting up blue and green to raise awareness.

[kkthefrontbottoms]

hey it’s anon again i’m very very self conscious about having nf1 and i really find it hard to reach out. hence why i’m on anon rn lol.

none of my friends apart from a very select few know and when my confidence is up i just wanna make friends with some nf1 ppl. i’m 24 and the last i spoke to anyone with nf was when i was 8. my parents took me to the NF society thing which i have some pretty happy memories off.

i just want to relate to people instead of having just myself. like nobody gets the anxiety of getting a neurofibroma or worrying when something isn’t totally 100% okay and i just wanna feel included in this very lonely club :( i’m the only one in my family that has it too.

i’m from the uk btw

Sorry if this response is a lot, anon. You are the first adult with NF1 I've been able to talk to about these things so I'm going to ramble. I'm 22.

I'm also the only one in my family that has it, and the only time I've met someone with the condition was in the waiting room at the neurologist. It can be really isolating because no one, even those closet to you, can understand what its like to have a body riddled with tumors. Sure, they're benign but it's still anxiety-inducing.

I remember when I learned that something made me different from all the other kids, I was nine and there's some sense of community that I haven't been able to access sense. These lumps on all over my body have always separated me from my peers, the way they ache, and the way I fear what could be growing somewhere inside me, without my knowledge is terrifying, and it's not a fear anyone can relate to unless they have the condition. Plus, when I talk about it, it sounds like I'm paranoid and my friends can't understand. Knowing you are different, and not having any who is that same type of different is a terrible feeling. I've been thinking about trying to make a discord server for people with NF, but I need to find enough people first.

Since I turned fourteen, my mom has been pushing for me to get surgery to get my fibromas removed. And while it would be great to be free of them, it often feels like she just wants me to be "normal." She's never asked if it's something I want to do with my body. Sometimes, I don't mind it, the being different, but then I look at myself in the mirror for a second too long or I imagine my body and all the ways my life would improve without these bumps and lumps all over.

Plus, there's another added element being trans and starting hrt, not knowing what can happen because there's no research on a body like mine or yours that is also a trans body. But, unless you're also queer, I don't want to get into that. There's so little information about NF that I considered studying neurology just to understand my own body. Sure, we're only one in three-thousand, but isn't that still a large enough amount for people to care?

But, there's gotta be humor in this somewhere. I don't have a fear of needles or MRIs because I never was able to, there's some humor in that, I think. I don't know what your experience was like growing up, especially as a teen, but I want to think there's something about having sat through a dozen MRIs before I was fifteen that made me stronger. There has to be something about all the blood work and exams that will make the rest of life easier, right?

Once again, sorry if this was a lot. It was very cathartic to be able to know someone else might understand what I feel

[irochrome-system]

Pinned Post For the Irochrome System!

Hi Sysblr! This is a sideblog for a main account! If you know our main no you dont-

We're an Australian-Polynesian undiagnosed OSDD-1B system of 14 found so far! We're bodily 21 and use they/them when mentioned collectively.

Were also undiagnosed in a lot of funny brain moments but we are diagnosed with NF1. Look it up it's so wild

We do have introjects/fictives as well, though mostly those of a deltarune source are happy to talk! However, the Host is usually front stuck, so it is difficult to communicate when cooperation is low. This counts for the whole system.

Frequent Fronters:

Mønø [Host] - FRONTSTUCK

[he/they/dey/its/spams]

Ralsei [non-fictive/selectively-mute]

[No Pronouns]

Spamton G Spams [Fictive/Source-Pos]

[he/him]

Liam [Just A Guy]

[they/them]

Sarah [co-host/dormant(?)]

[he/him]

Only added here due to his role and how much the system misses him rn

DNI: Fakeclaimers, Proshippers, TERFs, SWERFs, Bigots, Syscourse [syscourse engagers fine, just dont drag me into it], Ableists, Aro Ace Exclusionists [host is aroace], Transmed, etc. i think you get the gist [if not im not against adding to this list]

Anyway welcome to our blog or something

[joelvalerovasquez-pho101]

Joel Valerio-Vasquez Professor Nichole Frocheur

Photography 101

Erin Borzellino’s Website: https://www.erinborzellino.com/

Erin Borzellino, a freelance portrait photographer based in the NYC metro area is known for her work that provides a sense of peace and love within the photo. She has a photography exhibit at Port Chester, NY where she has all of her work laid out since the day she started. Born in central PA but decided to settle in Harrison PA.Her inspiration to take photographs of young children comes from her son Giorgio who has Neurofibromatosis (NF1) and this reflects off of one of her bodies of work called Unstoppable which reveals stories of young children who experience disability on their day-to-day basis. She is also the founder of The Giorgio Foundation which is named after her son and she organized this foundation in hopes of being able to find more research and a cure for NF1 which her son possesses. Erin captions these photos with a description of each child's condition and their success in life despite their living conditions. Her images portray positive vibes from each subject as she shows only the brightside and their accomplishments in life. Another body of work that has a similar theme to this body of work is one called Under the Waterline which showcases images of females appearing to be weightless while having only their heads above the water line. This body of work is seen more as an analogy. The analogy is that even though life may push you below societal standards, there is always a way to find your normal life above normal standards no matter the challenge life brings upon them.

When it comes to comparing the aspects of each photograph “Unstoppable” and “ Below the Waterline” Erin chose to capture every photo from both bodies of work to have the subject doing normal active activities which makes these photographs candid and taken with different apertures and depth of field. “Unstoppable” is full of color and positivity making the photographs clear to understand the message that she is trying to get the viewers to understand while in “ Below the Waterline”, every photograph is in a black and white filter and the photos come off as emotionless and questionable as the females appear to be weightless in the water. Multiple interpretations could be made by comparing both bodies of work since there is lack of context from “Underneath the Waterline” which would leave viewers questioning Erin’s photographs such as” Is there a purpose on why she took these photos?” Erin was interviewed by the Local Moms Network to ask a bit about her life and why she pursued photography. Erin stated that she was in the business for 7 years and only decided to start because she was getting recognition by other people part of her south shore community at the time where she lived and not only the attention she was receiving from her mother. Altogether when observing all of her pieces of work, you can conclude that Erin enjoys telling her audience the stories of these people that she takes self-portraits of and creating mini-documentaries of them.

Work Cited

“Meet A Mom: Erin Borzellino, Photographer + Founder of the Giorgio Foundation.” Sound Shore Moms of Westchester, https://soundshoremoms.com/meet-a-mom-erin-borzellino/.

Borzellino, Erin. Erin Borzellino, https://www.erinborzellino.com/.

[lil-doloina-kitten]

Hello!

Idk how many people will see this as this is a new side account of my other but I've never really talked /broadcasted this on the internet as it's something I really really struggle with on a daily basis even though I've had it all my life. (The photo is the only one I have really that shows my leg brace as I don't like showing it a lot )

I've used the internet (mainly my Instagram) as an escape, an outlet I could be a "better" version of me. Or so I feel so. It's hard to see my physical disabilities online and it's been so hard to tell the online world about that part of me. I did share on Twitter last week or so now. But I'm still trying to work up the courage to do it on my IG.

I was heavily bullied in primary school and high school. It's something that's stuck with me how cruel people treated me. The consent operations too. It took a told on my mind as well as my body.. now having to deal with all the side effects and mental illnesses from my disability and childhood it was very hard to talk/make friends in person due to abuse of a "friend" in the past. Been called names and laughed at left me with such self esteem and body issues to the point where I couldn't look at Myself in the mirror for years. And still now I struggle with it.

I've always found/try to find the positive and good in people so I did have lots of people take advantage of that. I never saw the point in being mean and biting back (I'm just a passive person) sorry for the big stuff just thought to let this out and be more open and kind to myself. I still find it very hard as there is times I kinda forget I'm disabled/ don't feel it till I get up and walk or look down and it's like "oh yeah... " There is more I could get into but this will go on forever aha

I hope you all are well and happy

Blessed be ~

[chronic-confessions]

Confession #4,249

Honestly lmfao because I might have both POTS and Chrons. Like I know I still have it far easier than some and I'm doing better than I was just a year ago. But if this is my body now with PCOS, NF1, Chronic Migraine and AMPS in remission, what the fuck does 40 something year old me look like? Especially with the addition of POTS and Chrons? Like fuck man. Being middle aged already sounds like so much work that I sometimes wish I could not. But all this plus middle aged?

[themogaidragon]

A neurofibromatosis disability/disorder flag please

Neurofibromatosis Pride Flag

Neurofibromatosis (NF) is a group of three conditions in which tumors grow in the nervous system. The three types are neurofibromatosis type I (NF1), neurofibromatosis type II (NF2), and schwannomatosis. In NF1 symptoms include light brown spots on the skin, freckles in the armpit and groin, small bumps within nerves, and scoliosis. In NF2, there may be hearing loss, cataracts at a young age, balance problems, flesh colored skin flaps, and muscle wasting. In schwannomatosis there may be pain either in one location or in wide areas of the body. The tumors in NF are generally non-cancerous.

Source: Wikipedia.

I used the brain tumor flag by @pinkfruitgender as my inspiration both for the colors and the meanings.

The flag meanings are:

Pastel pink: the three types of NF

Yellow: neurological differences

Pastel red: pride and community

Yellow: chronic illness

Light beige: diversity of experiences between all people with NF

[anxiously-going]

Today is NF Awareness day.

Having Neurofibromatosis (type 1) has never been boring.

It is something that...I often say doesn't impact my daily life because it isn't as sever as it could be. It doesn't cause me pain on a daily basis, I've had to have a few surgeries to remove growths, but they just turned out to be regular cysts.

I say NF1 doesn't affect my everyday life, but the truth is that it does.

I have an enlarged optic nerve.

My ears ring almost constantly to varying degrees.

I have scoliosis. (As a result my hips are uneven and I walk with a constant limp.)

I have undiagnosed neurodivergence, and very likely undiagnosed dyscalcula, which is a learning disorder related to mathematics.

These are all things that are very common with having NF, but aren't the "typical" symptoms people think of when discussing NF.

NF doesn't impact my daily life the way most people expect or might assume, but it does make an impact. It shapes my life in many ways.

In all honesty, I don't expect there ever to be a cure for it. It's a gene mutation, and I don't see how medication can fix that.

For all that it does have an impact on my life, I'm not even sure I'd want a cure, to be honest. It would be nice to not have to worry about my spine, or my eyes worsening, or the potential for hearing loss, but... I would be afraid of how a cure would change me. It's like how much the Autistic Community talks about how autism is an integral part of them, to take that away would be to change who they are, because of how autism shapes them.

I know, I know how horrible this disease can be. My great grandmother was institutionalized because of a growth on her brainstem. I know that...to this point in time I have been "one of the lucky ones". I'm also aware that that can change literally over night. I am not at all against cure and treatment research for NF. But NF1 is part of me. And I'm okay with that.

More than anything what I want is to be able to say "I have NF1" and have the person to whom I'm talking know what I'm talking about.

I want people to know what it is, and the many ways it can impact a person beyond fibromas.

[neurosciencenews]

Sensory Neurons Outside the Brain Drive Autistic Social Behaviors

The loss of the protein neurofibromin 1 (NF1) in adult male flies resulted in social impairments. The deficits were traced back to a primary disruption in a small group of peripheral neurons which control external stimuli, including touch and smell, that communicate to the brain.

[ftxfagula]

I sure wish there was more research on my genetic condition and hrt… love having it be so up in the air about if I get to go on testosterone or if it will cause my tumors to grow.

[divine-ruin]

Hi there!

It's good to be back! I apologize for the long inactivity and hope to interact with you in-game/Tumblr/Discord soon! After a crazy 1.5 year whirlwind of severe health issues (internal bleeding that couldn't be found, multiple surgeries for benign tumors trying to shatter bones, multiple procedures to just plain fix me, on top of finding out that I'm an NF1 carrier where some of these issues decided to choose a very weird point in my life to surface), I went into a deep depression and was pretty much isolated from RP as one of my few outlets with IRL turning completely upside down for myself and my family. That said, I've been very blessed with a chosen RP fam of my own that have not only been patient and understanding with what has happened to me, but they stood by me and stuck to me like glue. (*cough* @zhauric @cadrenebula @gaggle-of-dorks-ffxiv @eligos-venator @quirkycoterie @nocturnedreaming @thevoilinauttheory) Their dedication and love gave me the strength and inspiration to continue on and so here I am. I'm still recovering from a lot and there are some days still where my health decides its going to ground me for whatever reason, but I am trying to get back to the community I cherish so much.

While you all know this blog is Iria's main, from time to time I will answer asks through the eyes of my other characters (especially if I get more than one of the same ask).

All of my character blogs can be found here:

Ada Nicholaides - @whispering-dawn

Zara Nicholaides - @aetherical-cosmos

Edrian (Ian) Nicholaides - @ocean-templar

Syla Beausejour - @the-summermoon

Kyneirra (Kyna) Beausejour - @the-nightsea

Shida Mizushima - @star-spring

Rhonalyna Krystgeim - @quiet-mountain

V'Sheexi Nalih - @peaceful-pugilist

I would include screenshots but I don't want to eat up your feed. :)

I live in Texas and am in the CST timezone and play on both Balmung and Mateus. Because I work for the military my days start really early, by at least 5AM. That said, my usual RP times during the week are Monday, Tuesday, Thursday from 5pm until 9pm, Friday evenings from 4PM on, Saturday evenings can be hit or miss depending if I have any plans or other things going on, and all day long on Sundays until 9PM.

My Discord is Iria#9848 and I'm always down to chat/RP during the day so long as my work day doesn't get overwhelming. Don't be afraid to poke me because I promise I don't bite hard.

Enjoy your day and blessed be!

[morinokunikara]

I hate my nf1 I hate it so much I'm so isolated from the nd community bc they only care about the common/well known stuff. The only way for me to MAYBE find other nf people is with Facebook and I don't even know how the fuck to navigate Facebook I spent like 20 minutes just trying to find some old pictures I was tagged in the other day.

[di-elle]

Margaret Cavendish, first modern science fiction and fantasy novelist.

Margaret Cavendish was a 17th century English duchess who wrote and published prolifically, producing several volumes of poetry, plays, letters, and essays as well as prose fiction. This in itself was trailblazing: most women at the time did not have the freedom or resources for sustained engagement in public intellectual life, but Cavendish’s various privileges (and the support of her brother and husband) enabled her to become something of an exception. She was the first woman to attend a meeting of the Royal Society, where scientific experiments were presented to a private audience. However, due to her gender and her challenging ideas, she was generally considered a laughing stock by the men of the Enlightenment, with Samuel Pepys declaring her ‘mad, conceited and ridiculous’. The Blazing World is – among other things – an expression of rage against her exclusion from the scientific and intellectual communities of the time, and an assertion of her own worth in the face of their mockery.

More info at the source. Go read it. Is fascinating

[divalectics]

After YEARS of asking, I got a referral to see a geneticist for NF1 & Ehlers-Danlos syndrome. The appointment is November 21st!!! I dont wanna hear ANYONE whine about how under communism or socialized healthcare you'd have to wait 6 weeks to see a specialist. Try 9 fucking months

[christinaseas]

(via christina c on Instagram: LINK IN BIO)

https://my.cupids.org/cchristina

Is it too late for the #tenyearchallenge? This is my #2009vs2019 I wanted a serious reminder that research saves lives. Even sometimes in unexpected ways. I fudged it a little bit considering the former is from December, but let’s roll with it. As for today, my selfie game has always been kind of weak, I was aiming for something a little more brooding, but how can I say no to a cat? Anyway, Shortly after I turned 18 I was invited to participate in research studies related to NF. Part of this involved signing off on my past MRIs and people examining parts of my brain that never necessitated a close look. They found an AVM – a problem not typically found until they’ve caused irreparable damage, from hemorrhage. They’re commonly diagnosed in autopsies. Cases like mine have become more common in the past decade or two, but I still l lucked the fuck out. I don’t know where I’d be if I hadn’t been a part of research. It was always important to me to give back to the NF community for those who had it worse than me, but it’s especially important to me now that it’s such a big part of why I’m still here (and can plan on continuing to be here). Which brings me to @cupidsundierun and @childrenstumorfoundation. I don’t know if CTF was behind the research I participated in. I don’t know anything about who conducted it beyond that it was facilitated through @childrensphila . I still wish I could thank them. I’ve already talked about the meaning of #itakemypantsoffforcharity about a week ago, so I won’t get into that again, but I’m doing that this Saturday! So, once again, I invite you to please donate to my fundraiser. It would mean the world to me. Also, still an open call to join me team, maybe drink a little, run a mile-ish, all the fun jazz. ¯\_(ツ)_/¯ #endnf#neurofibromatosis #nf1 #imwithcupid#charity #charityrun #catsofinstagram#doputtingallthesetagsreallyhelpthingsgetseen