#rare disorders

[simnouveau]

hi everyone. i hope you're all well. i've recently been faced with some serious health issues and i've had to start a gofundme (trigger warning for post surgery photos). honestly, all of this is so hard to talk about and putting myself out there like this is terrifying, but i need support. if you have a moment, please take the time to read my story and consider sharing / donating. anything helps and it could make all the difference in getting the care i need. thank you. ♡ 

[eosinophil-hate-blog]

[everydaymindsmatter]

Rare Mental Disorders: Understanding the Uncommon

Mental health awareness has grown significantly over the years, but there are still many rare mental disorders that remain largely misunderstood. These conditions can affect individuals in unique ways, often leading to challenges in diagnosis and treatment. Here, we explore some of these rare disorders to shed light on their characteristics and implications. 1. Capgras Syndrome Capgras Syndrome…

[secretstime]

Rare Mental Disorders: Conditions Beyond the Mainstream

[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.

[sad-leon]

what if i gave rise leo BPD...

his anger manifests in the form of self-sabotage and self harm. he asks donnie to sound proof his room when they get to the new lair so he can wreck it without concerning everyone else. before that he'd sneak to the surface and wreck an already messy alleyway

his self harm is recklessness. he gets hurt in fights as much as he can and still get away with just a "please be more careful" lecture from raph

speaking of raph, his oldest brother is his favorite person. so when raph starts to brush him to the side and distrust him, he doesnt take it well. when he does something to impress raph and all he gets is "finally..." thats when he disappears for hours and comes back home with sore arms and usually some scrapes and many bruises

he becomes a medic because they can't ignore him if he helps them. plus he can get better at hiding his breakdowns if he can take care of his own injuries

he wants to be in the spotlight so bad until the spotlight shines on him and suddenly his skin fits wrong

splinter and raph brush it off as teenage hormones. donnie shuts it out. mikey is the first person to realize leo's moods aren't normal, but he doesnt want to confront the fact the bpd comes from trauma, so he tries to support leo as best he can

april doesnt realize how much leo's mood shifts until she spends a night in the lair and realizes that leo isn't as hyper as he presents himself. he tries to mask, but he's too tired and the sudden silence from leo throws april off. it creates a rift between them. even when leo is happier around april, she knows somethings wrong- knows its not quite as genuine as she thought.

she spends more time around donnie than leo and leo thinks its for the best. eventually all his brothers- all his family prefer spending time with someone thats not him. he tells himself its for the better- the less time they spend around him, the less likely he'll be upset around them and end up making them upset

leo convinces himself he's meant to be alone and puts his all into being the team medic and spends the rest of his time alone and dissociating. he hates being the leader- having everyones eyes on him all the time. watching him. waiting for him to mess up- to act out- to prove they were right not to trust him

.... idk.. just a thought

[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.

[summoningspark]

so i may or may not have printed out the entirety of @anonymousalchemist's amazing fic like a bird, like a stone onto three Very Large pieces of paper.

you might be asking, why, fay? why did you print out an entire 53k fic for a video game you've never played? well you see, if you read it, you would understand.

[neurodivergentbraingoblins]

This post is a shout out to all my chronically ill friends ❤️

"If you are in that much pain just go to the emergency room" 🤣🤣🤣 no, just no. The ER does not do what most people think it does. It exists for people who need to be stitched up or suddenly broke a bone. They do NOTHING for pain management and actually will verbally harass patients for going in and wasting their time. I know. I've been one of those patients harassed by the people who are supposed to help me.

"They gave you a referral to a specialist right? Are they going to see you next week then?" - it took 3 months for me to get an appointment with Neurology after getting the referral. Genetics took 2 months, cardiology was a month, and I'm still waiting to hear back from St. Louis about seeing a neurologist there (that referral was put in on August 9th). It takes months to get in to see these doctors, then they spend about 5 minutes (10 if you're lucky!) talking OVER you. Every visit is a fight against the doctors ego to see if you will actually get help this time.

"Maybe you should go to Mayo Clinic or some other place out of state!" - cool, who is going to take me? Who is going to take a few weeks out of their own life to drive me there and stay with me while the doctors do their thing? I can't see so I can't drive myself. I haven't worked since July because of being sick, so I can't afford a ride or place to stay.

"Can't you go a couple days without medication? I know the pharmacy ran out, but it really can't be that big of a deal right?" - I don't even know how to respond to this one. Seriously? The doctor put me on the meds for a reason. Most of them have serious and dangerous side effects when you go through withdrawal. Also depending on how long I'm without them, I have to start back at a lower dose and work back up to the dose I was originally on. Which means TWO prescriptions that I now have to pay for.

"Do you really need to bring your walker/cane with? It's annoying to try and get it in and out of the vehicle. Plus it just slows us down" - do you really need your legs with? It's annoying having to wait for you to put your shoes on. Plus when you wear those specific shoes you walk weird. If you can't stand someone using a mobility aid to help them get around then go find a new group of friends to do things with. I have just as much of a right to be able to go out and enjoy things as anyone else.

There are plenty more things I could add to this post but I'm exhausted.

[kirby-the-gorb]

we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!

(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)

all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.

for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?

I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.

after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.

okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)

being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)

anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍

[aspd-culture]

Hi, a bit of a weird question, but I noticed that a lot of people I follow, who have aspd have a strong connection (not really sure how to explain it) to wolfs/dogs and canines in general, and I just wanted to ask whether this is a general thing or is it just my circle lol

Yeah I mean that tracks. My abuser was super into wolves, so I don’t relate to those *anymore*, but I previously identified as a wolf and therian and still follow dog therian tags as a shape-shifting alter including dogs.

I think it’s sort of like how autistic people sometimes like cats: cats behave in a way that makes a lot of sense to autistic people and they can relate to.

The same kinda goes with dogs/wolves and pwASPD. Some breeds of dogs and all wolves are seen as aggressive, dangerous, uncontrollable, and are avoided and some people even think should not be bred or be put down - all for things that have nothing to do with the animal themselves and in fact are about how they were treated. If you mistreat a dog through its formative years, you’ll get a very *defensive* (not aggressive idc what people say) dog. They’ll be quick to attack and maybe not warn first the way other dogs will because they learned that’s what keeps them safe - me fuckin too dude - and they risk getting literally put down in a legal and community supported way for that behavior they never asked to be taught.

And this is just a personal thing, but I kind of romanticize the idea of being a dog - because there’s a large community of people who understand that it’s not the dog’s fault and will fight for them to be accepted and understood; who’ll meet that dog where they’re at and work with them with complete understanding and forgiveness for anything the dog does wrong. People who will *get bitten* and apologize for scaring the dog. And what really makes me envy dogs is that dogs are able to turn it around no matter how old they are - even senior dogs who were extremely reactive can usually be turned around and act like a normal dog or even be particularly caring and docile because dogs can be taught at any age that they are safe now and they don’t need to behave that way anymore. I wish my brain was capable of learning that and undoing all the neurological damage people did to me, and I wish people would look at me and see and understand the stress and anxiety in my eyes when I act out because I felt unsafe.

So uh yeah, anyways, I’d say it’s not uncommon.

Plain text below the cut:

Yeah I mean that tracks. My abuser was super into wolves, so I don’t relate to those *anymore*, but I previously identified as a wolf and therian and still follow dog therian tags as a shape-shifting alter including dogs.

I think it’s sort of like how autistic people sometimes like cats: cats behave in a way that makes a lot of sense to autistic people and they can relate to.

The same kinda goes with dogs/wolves and pwASPD. Some breeds of dogs and all wolves are seen as aggressive, dangerous, uncontrollable, and are avoided and some people even think should not be bred or be put down - all for things that have nothing to do with the animal themselves and in fact are about how they were treated. If you mistreat a dog through its formative years, you’ll get a very *defensive* (not aggressive idc what people say) dog. They’ll be quick to attack and maybe not warn first the way other dogs will because they learned that’s what keeps them safe - me fuckin too dude - and they risk getting literally put down in a legal and community supported way for that behavior they never asked to be taught.

And this is just a personal thing, but I kind of romanticize the idea of being a dog - because there’s a large community of people who understand that it’s not the dog’s fault and will fight for them to be accepted and understood; who’ll meet that dog where they’re at and work with them with complete understanding and forgiveness for anything the dog does wrong. People who will *get bitten* and apologize for scaring the dog. And what really makes me envy dogs is that dogs are able to turn it around no matter how old they are - even senior dogs who were extremely reactive can usually be turned around and act like a normal dog or even be particularly caring and docile because dogs can be taught at any age that they are safe now and they don’t need to behave that way anymore. I wish my brain was capable of learning that and undoing all the neurological damage people did to me, and I wish people would look at me and see and understand the stress and anxiety in my eyes when I act out because I felt unsafe.

So uh yeah, anyways, I’d say it’s not uncommon.

[eosinophil-hate-blog]

[makethiscanon]

Aaannnddd Freminet has quickly shot up to Chongyun level of love from me. He's a precious soul who needs protecting 😭 I want a hangout with him immediately.

[pdid-culture-is]

P-DID culture is feeling awkward when people ask who's fronting and we either don't know or it's always me because I'm always here and can't relate to systems that can switch

.

[redroses07]

The worst part about being chronically ill/ living with a rare disease, is I have to explain that I’m not in class cause I had an episode, fell on the floor, then couldn’t get out of bed.

[cluster-b-culture-is]

Cluster b culture is being scared of getting into new relationships because people get upset when you tell them your diagnosis. How are we supposed to know if they're safe to tell unless we bring it up?

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