#rare disabilities

[frightnightindustries]

Zebrapunk

Zebrapunk: A punk term made by and for people with rare diseases and disabilities.

If you didn't know, the zebra is the mascot for people with rare diseases.

Doctors were told "When you hear hoofbeats, think horses, not zebras." To look for the more common answer.

Well, sometimes that's not the answer at all.

Zebras are here, and they're more common than you might think.

[zebulontheplanet]

I know I already made a post, but I have some more to say. NOT trying to derail at all, and you can tell me if this is out of line. I see a lot of people talking about rare disabilities and it’s so amazing to see people in the reblogs with their rare disabilities. I love that!! I feel like one of the reasons that rare disabilities aren’t all that talked about, is because they aren’t online. Terminal illness? Most of them are with family, not worrying about talking about it online. Genetic disorders? Lots of them involve intellectual disability, they aren’t online because they can’t be online.

My twin for example, she has something called Alexia. She can’t really read or write. She can read SOME and write SOME, but not enough to navigate social media without EXTREME support. We have not met one single person who’s her age and has this. Usually, we meet people with severe to profound intellectual disability and that’s the reason they can’t read or write. My sister doesn’t have severe or profound intellectual disability, she has mild. She cannot relate to them. And that’s fine!! But I know it’s lonely to her. She is almost FULLY independent. More independent than I will ever be. Yet, she can’t read or write. Therefore she can’t be online talking about it.

She doesn’t use a screen reader, because screen readers quite frankly SUCK ASS and are hard to navigate.

Rare disabilities need to be talked about, but we also have to acknowledge the big reason why there aren’t many people online with rare disabilities. Because they’re either dying, or can’t be on the internet because it’s inaccessible or something they can’t understand.

This isn’t at all me saying “well there aren’t rare disabled people online so therefore put those without rare disabilities at the forefront” that’s not at all what I’m saying. I’m saying, let’s acknowledge them. Let’s support them. Let’s find their caretakers blogs and communities. Let’s get involved and uplift their voices in the best way we can.

it makes me sad that the same few conditions consume disability discussions. the disability community is so diverse and I know there are other people out there who have diverse experiences. I think the community needs to do a better job of lifting up the voices of people with rare conditions (or even just conditions that aren't spoken about) I want to hear from people who have different experiences from mine. people with rare diseases often have very unique experiences and it's really shameful that we don't get to hear those voices very often.

anyways, if you have a rare disease (hEDS is not rare) or a condition that isn't talked about often feel free to promote your blog or share something on this post.

[oistrong]

This is very important...

[mavigator]

i talked about it a little bit already but i have things to say about it. for context, i was born with amniotic band syndrome. the amniotic band wrapped around my left wrist in utero and stunted the growth of my hand. i was born with about half a palm, four nubs for fingers, and a twisted half of a thumb. i can open and close my thumb and pinkie joint like a claw.

yesterday at work i had a shift in the room with 5-10 year old kids. i had my left hand hidden in my sleeve (a bad habit of mine). a kid asked if he could see my hand, and even though internally i was debating running into traffic, i said “sure you can” and showed him my hands. he stared for a moment, looking disturbed, and then said “i don’t want to look at that anymore”. that hurt to hear, but i understand that kids are new to the world and he probably didn’t mean it out of malice. i put my hand away again, told him that it was okay, and that i was just born that way.

he then went on to talk about how he knows a kid with a similar hand to mine and called it “ugly”. i told him that wasn’t a very kind thing to say and that he wouldn’t feel good if someone said that to him, and he replied that no one would say that to him—because he has “normal hands”, and he’s glad he does because otherwise he’d be “ugly”. i tried to talk with him for a bit about how everybody is born differently, but he just started talking about a girl he knows with a “messed up face” and pulled on his face to make it look droopy. i went on some more about how it wasn’t very kind to talk about people that way, but the conversation moved on to something else.

i’ve told my supervisors about it and they’re going to have a talk with his mom. what i wanted to say is this: i’m genuinely not upset with the kid. kids are young and naturally curious, and he clearly simply hasn’t been taught about disabled people and kind ways to speak to/about others. which is why i am upset with his parent(s). i know he’s encountered visibly deformed/disabled people before (he said so himself!), yet his parent(s) clearly haven’t had any kind of discussion with him about proper language and behavior. i knew from birth that some people were just different than others, but my parents still made a point to assert to be kind to and accepting of others. i wonder if adults in his life are the type of people to hush him and usher him away when he points out someone in a wheelchair. that kind of thing doesn’t teach politeness. it tells children that disabled people are an Other than can’t be acknowledged or spoken about; which, to a child, means disability must be something bad.

i’m lucky enough that this was a relatively mild incident, and that i’m a grownup with thicker skin. i’m worried about the other kids he mentioned to me. has he been talking to them this way? when i was a kid, i had other kids scream, cry, and run away at the sight of my hand. or follow me around pointing at me and laughing at me. or tell me i couldn’t do something because i was ugly or incapable or whatever. one time a girl at an arcade climbed to the top of the skeeball machine, pointed at me, and screamed at me to put my hand away and wouldn’t stop crying until she couldn’t see me anymore. another time, a kid saw my hand, screamed at the top of her lungs, and ran into my friend’s arms, crying hysterically about how i was scaring her. that second incident made me cry so hard i threw up when i got home. i can kind of laugh it off now, but having people react to me that way as a child is something i’m still getting over. why do you think i have a habit of keeping my hand in my sleeve? it just irritates me to see children that have clearly not been taught basic manners and kindness—their parents Clearly missed something pretty important .

[frozenflvrries]

Like this if you either or both are blind/low vision, Deaf/Hard of Hearing, neurodivergent, disabled, chronically ill, has a rare disability, apart of ROYGBIV crew, introverted, or you are awesome!!!

[chronicallycouchbound]

Being born with red hair is just as common as having green eyes and just as common as having Dissociative Identity Disorder and just as common as being intersex.

[normal-with-adhd-is-a-joke]

Places with "just a few steps" aren't accessible to ambulatory wheelchair users, either. This isn't an angry post because I don't know if full time wheelchair users really understand that, but a lot of ambulatory users are just as fucked when encountering a step as full time users. The problem is not that ambulatory users are the only people being accommodated. The problem is that business don't think or care about any wheelchair user and ambulatory users are only sometimes accommodated by accident and only if they're a very specific kind of ambulatory. The "well we're accessible if you can walk a little" excuse is just that, an excuse to try to pin the problem on the wheelchair user rather than the business. It's not even a valid excuse because it fundamentally and perhaps intentionally misunderstands how a lot of ambulatory wheelchair users live.

I'm ambulatory but sitting up uses a large amount of my energy, almost as much as standing does. I use a Permobil M3 Corpus that has power tilt, recline, and footrest adjustment so I can adjust into an energy preserving position. My chair weighs 400lbs and I'm not leaving it outside or in a lobby so I can do a "couple of steps". I don't think the usually minimum wage employees get paid enough to babysit a $13000 piece of equipment that is virtually irreplaceable and vital to my freedom. I'm not the only person who can't get my chair over stairs and can't afford to leave it behind. There are plenty of ambulatory powerchair users. There are plenty of ambulatory users who can't lift their own chairs and don't want strangers touching their mobility aid. There are plenty of ambulatory users who can't do stairs at all. Most ambulatory wheelchair users don't want to leave their chair behind out of fear that it will be stolen or misplaced.

This isn't a time for pointing fingers and "who does society like better"ing each other. It's a time for demanding that the law be followed and new laws be put in place together so that no one has to sacrifice their safety and comfort to access necessities or entertainment or be barred from those things entirely.

[ofdreamsanddoodles]

i think mithrun is a really neat character because everyone around him is very aware that he is too disabled to live on his own, but that doesn't stop him from also being a capable captain. his arc is both "am i still able to be a Person after trauma?" and the understanding that regardless of how his healing progresses, he was always worthy of respect & personhood

[charismaticcollector]

fellow terminally ill people, i love you.

i hope your happy if you decided to spend the rest of your life filling out a bucket list.

i hope your happy if you decided to spend the rest of your life partying until you drop.

i hope your happy if you decided to spend the rest of your life continuing as normal, working a job and getting groceries and the like.

i hope your happy if you decided to spend the rest of your life resting and relaxing as much as you can.

i hope your happy if you decided to spend the rest of your life trying to find a cure of some sort.

i hope your happy if you decided to spend the rest of your life aware and okay with the fact you are going to die.

i hope your happy if you decided to spend the rest of your life working towards the future, even if you might not see it.

i hope your happy if you decided to spend the rest of your life with your loved ones, giving them memories to last their lifetime.

i hope your happy if you decided to spend the rest of your life focusing on yourself, not letting anyone else hurt you again.

i hope your happy if you decided to spend the rest of your life seeing the world.

i hope your happy if you decided to spend the rest of your life staying at home with your cat.

i hope your happy if you decided to spend the rest of your life doing anything, because you deserve it.

[creekfiend]

I'm soooooo tired of living like this I need competent medical care I NEED CARE. HELLO????? I'M SO FUCKING TIRED!!!!!!!!! SCREAM

[theofreakingbell]

I feel like this needs to be said bc I haven't yet seen anyone on here talk about it:

if you get Long COVID (which can happen to anyone who gets infected including if ur vaccinated, it's just rarer) and there is no record of you having COVID it can interfere with you getting any disability benefits for it if it disables you. if you think you may have COVID you need to test, and keep a record of the positive test if you do test positive. take a picture or video of it or something. you do not want to be up against the benefits system without evidence you had COVID.

source is this article which is also a good overview of many of the issues Long Covid survivors are having to face:

[wheelie-sick]

ILY people who are continually wrong about their self diagnoses

being right about self diagnosis isn't what makes self diagnosis okay. it's a process, and you're learning. it takes time to find answers and just like doctors can be wrong in their suspicions so can you.

figuring out what condition you have is hard and I'm proud of you for taking steps towards finding the right answers. being wrong is okay and is even a valuable part of the process of ruling things out. sometimes it's not a horse, sometimes you're just a zebra, and you can't know you're a zebra without making sure you're not a horse first.

[muttren]

i have a disability. more specifically, i have a rare genetic condition called camurati-engelmann’s disease, or CED. it is also known as progressive diaphyseal dysplasia (PDD). it is an extremely rare disorder and only around 300 cases have been reported worldwide.

i figured i would make a post talking about it, in an effort to not only educate others, but to possibly connect with others who suffer from it as well. i apologize for the longer post but please this moment to learn about my disorder.

CED is a skeletal condition that is characterized by abnormally thick bones (hyperostosis) in the arms, legs and skull. the overgrowth in bone causes bone pain, muscle weakness and extreme fatigue. the pain feels like an electric stabbing pain, an ever-increasing pressure sensation around the bones affected, or a constant aching. pain can also occur in joints and they will often lock-up, becoming immobile and stiff. the pain is especially severe during 'flare-ups', which can be unpredictable, exhausting and last anywhere from a few hours to several weeks. this is a common occurrence for us, often causing extensive sleep deprivation from the chronic, severe and disabling pain. when this happens, we are often bedridden or housebound for days or even weeks.

those affected also have an unsteady walk and limp. thickening of the skull can also lead to neurological problems, like hearing loss, vision issues, vertigo and tinnitus. symptoms vary in severity from person to person. there are treatments, however it cannot be cured. pain management is a large aspect of living with this chronic disease.

there is very little awareness and research for CED. rare diseases are severely neglected and overlooked, as are those who suffer and live with them. research is often not considered profitable due to their cost to develop and the limited patient population. major federal funding agencies give preference to research that is likely to have a direct impact on patients.

living with a rare disease is extremely difficult and isolating. it impacts the lives of millions of us and our loved ones worldwide. those of us suffering from rare medical conditions should be entitled to the same quality of treatment as other patients. i am disabled, but i am worth it.

[ckret2]

Fuck you for pulling that bait and switch with the comic on the second to last chapter of the apocalypse shit. Genuinely pissed me off. Give me hope that this’ll be a fanfic that takes a different route than just bashing on cipher because it’s funny and then pulling it away because haha why not right? Let’s just blame the guy literally actually suffering and act as if he’s in he’s in his right mind at all. Oh well who cares. Loved your fic until you pulled that shit

My dude, you're well within your rights to hate the bait and switch. It was a dirty trick, I'll admit that.

But if you think that I was bashing on Bill, that I wrote his grief as funny, or that I'm not fully aware that he was acting irrationally out of pain and despair—then you didn't read the fic I wrote.

You're supposed to be upset he turned down the help he needs. It's not a joke. I want it to hurt that help is so close, but Bill can't accept it because he's grieving too hard to let go of his people. I want you to be furious that nobody but the Ax thinks Bill deserves help, and the Ax alone isn't enough to reach him. I want you to want him to heal.

But we already know he didn't heal then. Because if he had, he never would have done anything he did in canon. Nevertheless, this is a fic about offering Bill a second chance, no matter what, as many times as it takes for him to accept it, even if it takes a trillion years—because, canonically, we know it will.

You can hate the fic if you wanted to read a fix-it AU and didn't get it, that's fine—but do me a favor and hate it for the canon-compatible backstory tragedy it actually is, rather than the bizarre Bill-bashing comedy you projected on top of it after the plot took a twist you didn't expect.

[casestudytobe]

Having a rare disorder or rare complications can be so incredibly lonely. Thinking of people who will never meet another person in person with their disorder or have difficulty even connecting with other people online with their disorder. Thinking of people with disorders or injuries that are common, but their age makes them a huge outlier. I feel alone, but I have to believe i'm not

[small-strong-bookish-butch]

I love you medical 'pioneer' patients

I love you people who are tired of hearing "we've never seen this before"

I love you people whose 'same disability' ancestors have died due to your disability

I love you chronically ill & disabled people where no one knows what you're talking about when you mention your disability/illness (or even when you talk about it in depth!)

I love you people who get told "Oh, that's just [much more common disorder]/ I can tell you have [much more common disorder]" when you talk about your disability

I love you people who don't know anyone 'like you'