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#autoimmune disease
hussyknee · 10 months
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The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was. Her name was April Burrell. Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself. April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality. “She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.” It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries reminiscent of a scene from “Awakenings,” the famous book and movie inspired by the awakening of catatonic patients treated by the late neurologist and writer Oliver Sacks. Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain. After months of targeted treatments — and more than two decades trapped in her mind — April woke up. The awakening of April — and the successful treatment of other peoplewith similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions. Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery. And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed. Although the current research probably will help only a small subset of patients,the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated. “These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.”
– A catatonic woman awakened after 20 years. Her story may change psychiatry.
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spookysalem13 · 7 months
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I'm chronically ill. I'm disabled physically and mentally. I live a rough life from day to day. People always tell me how strong I am.
This may be with the best of intentions but in all honesty I'm not strong, I'm very weak from being broken down every single second of my life from my chronic illnesses.
I don't get to live my life, I'm surviving not thriving.
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tiredsn0w · 8 days
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This can't just be me, right?
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incognitopolls · 2 months
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We ask your questions so you don’t have to! Submit your questions to have them posted anonymously as polls.
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moonshinemagpie · 6 months
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autoimmune diseases faq
an autoimmune disease occurs when your immune system mistakenly attacks your own body
whether or not this counts as a "disability" depends on both how you're defining "disability" and the severity of the disease. This is a huge, multifaceted topic.
Example: I am considered disabled in my doctor's office. I was considered disabled at university, where I received accommodations. I am not considered disabled by American social services, because I can work. I WAS considered disabled by Japanese social services when I lived there. I do personally identify as disabled. All of these contexts and definitions differ.
generally, autoimmune diseases are not curable. some are very treatable and some are not
people can have more than one autoimmune disease and they can manifest differently. e.g., I have one that's always remained moderate and two that are severe.
autoimmune diseases are very under-researched, underfunded, and often poorly understood; that they've been so neglected by researchers and also primarily affect women is not coincidental (if you want to read more about this, I recommend the book Doing Harm by Maya Dusenbery)
many autoimmune diseases can lead to life-threatening complications.
many autoimmune diseases can result in what able-bodied people typically associate with disability, including blindness, paralysis, and immobility.
what can be very confusing for many is that autoimmune diseases can result in "dynamic disability," which means that one's ability to perform tasks varies day-by-day or even hour-by-hour. e.g., I can never run but I can usually walk; a few times a month, I can't walk at all; I can usually see but sometimes I become blind in my left eye. These are dynamic disabilities.
many autoimmune diseases manifest as "invisible illnesses." an invisible illness does NOT mean: 1. the illness is not severe or 2. the illness is not a disability. It ONLY means that people cannot see the symptoms. examples of invisible illnesses include dementia, heart disease, and multiple sclerosis
EDIT: yes, I made this in response to a poll that made me uncomfortable, but I wish I'd sounded less incendiary. The poll maker definitely had no ill intent and sounded young and/or like they just hadn't spent a lot of time on the wording of their Tumblr poll which, you know, fair. Please don't gang up on this person in the tags!
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waitingforthesunrise · 8 months
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I love you people with autoimmune conditions. I love you people with visible bodily symptoms. I love you people with invisible symptoms. I love you people explaining their interesting diets at every dinner party. I love you people struggling to explain what’s happening to them. I love you people with brain fog and fatigue and sleeplessness and pain. I love you people who have a bag full of medications and I love you people who don’t have any. I love you people with Hashimoto’s disease and psoriasis and celiac disease and crohn’s disease and everything else. I love you people battling for their mental health. I love you people making peace with their bodies. I love you people at war with themselves. I love you people discovering how to love a body that is trying desperately to love you back. I love you.
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tombraiderrocker · 1 year
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*wakes up*
Me: time for my routine
*convinces myself I am overacting/faking my chronic illness no matter how bad my symptoms are*
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certifiedceliac · 2 years
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[Img id: bugs bunny meme. To the left the text reads, "I wish all people with chronic digestive problems a very plesant evening".]
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god i hate to do this when so many other people are in need too, but we need help SO badly right now.
i had to quit my last job because im immunocompromised and i became severely ill after my coworkers got me sick twice in one month. im looking for a new job but work from home jobs are extremely competitive and it's hard to find an in-person job that i can perform despite my disabilities.
my fiancee and i saved enough to barely cover this month's bills, but there was recently a massive power outage due to a storm in our state and all our groceries went bad before they got the power turned back on. we tried to save what we could because it's all we had, but it gave me food poisoning which im still recovering from and so now we're officially out of food. i also have had to go to the ER for an unrelated issue (my severe asthma) and can't afford the short-term medication they prescribed me there, or the asthma meds that will prevent me from having to go to the ER again.
so we really, really need money to cover food & medications for this month. $400 is our starting goal for now. please spread even if u can't donate 😭💕 and please don't feel like u have to donate if you're struggling with poverty as well
(please ignore the deadname on my p*ypal...)
p*ypal: paypal.me/cryptidfriend105
c*shapp: $RaphaelSchmidt
v*nmo: crypticangels
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liyazaki · 6 months
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"specially abled" and "disabled" are absolutely, unequivocally not interchangeable terms. & yeah, it actually is that deep.
I wish my autoimmune disease made me specially abled instead of regularly ill. I'm a pro now at managing constantly-changing treatment regimens, coordinating monthly (if not more) doctor visits & endless bloodwork, but alas- that's not a superpower. it's the day-to-day reality of living with a disability.
I can only speak as a someone who was relatively healthy before I got sick, but the mourning period I went through was brutal. getting diagnosed with an incurable disease brings a metric fuckton of grief with it, requiring a huge perspective shift.
I'm an intensely independent, self-reliant person- sometimes to my own detriment. unsurprisingly, coming to terms with this new reality was no small task.
when I was finally diagnosed, I made a playlist (my go-to coping mechanism). I played one song on a loop because of its namesake line, & it still packs an emotional gut-punch for me: "I needed to lose you to love me."
I was angry at my body for 'failing' me- for having zero control over such an all-important outcome (my health). I had to reconcile myself to the reality that my life was different now. I had to lose my old view of myself to love the new version that needed more sleep, more sick days, more accommodations.
it took me years to get comfortable using the term "disability" to help describe what's now a big part of my lived experience (especially since mine is invisible). it went from being a foreign term I could've never imagined using for myself to my bridge to self acceptance.
(note: I have my own complex relationship with the term, as do most people. I’m talking about the harm in equating terms here, not implying that anyone should use these words to describe themselves. that’s entirely up to the individual.)
there's nothing romantic about my disease- a quality that "specially abled" imbues for me. do I- & all disabled people- have special abilities, valuable experience & unique skills? you bet your ass we do. one has absolutely nothing to do with the other.
every person has the right to choose the terms they're comfortable with to describe their experience. for me? treating "disability" like a dirty word 1) glosses over (if not entirely erases) the very real, life-altering struggle inherent to my condition, & 2) muddies the waters, potentially making it even more difficult for disabled people to get the accommodations we need when we need them.
using terms like "specially abled" isn't some evil, awful thing, though. if anything, it tells me that the person is trying to be delicate & respectful with their word choices. I genuinely appreciate that, even if it's misguided (in my opinion).
when in doubt? listen to how people describe themselves. honor them by using the same descriptors (unless they tell you otherwise). choose to believe people when they tell you how terms affect them.
forgive yourself if you don't always get it right- who does? perfection isn't the point- effort is the point. kindness is the point. respect is the point. how we get there is as varied as people, but it starts with the words we use.
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painroulette · 2 years
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Just wanted to hop on here to say that if you feel like your disability will prevent you from working or going to university or anything like that that it’s fine to listen to your body and not do those things.
If you really want to push yourself and try regardless, then that’s fine too, that’s you’re choice. But as someone who’s pushing herself through her last year of university just because my disability got drastically worse this year but it feels like a waste to not go through with it - if this had happened any other year, I would have dropped out. Straight up.
There is no shame in knowing when you can’t do something, and there’s nothing wrong with giving up. Sometimes we feel pressured to do things just because we feel like we should, whether that pressure be from other people or ourselves. It’s ok to not be ok and for that to impact your life in significant ways.
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recovery-is-brutal · 2 months
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Honestly? If something helps you, use it. You don’t have to be chronically ill or disabled. If it helps, you can use it.
I used to force myself to stand while showering, shaving, brushing my teeth, folding laundry. Why though? If sitting makes the task easier, I’m allowed to do it.
I used to love going on long walks and even hikes before I started feeling so weak and out of breath all the time. The experience was soured by my chronic pain. And you know what? I started looking for a large stick to use as a cane every time my friends take me on a hike. They laugh at me. So what? It makes the experience better for me.
I don’t have to wear tight clothes that make me feel like I’m suffocating. If I look 20% less attractive in my comfy sweater and baggy pants, who cares? Who am I trying to impress? Isn’t it better to be 20% more comfortable instead?
Why force myself to overeat if it makes me sick? Please pack up the rest for me so I can eat it later. It’s not that I hate your cooking, I’m respecting my body’s needs. Why force myself to stay awake when I need rest? Let’s continue having fun tomorrow, when I have the brain capacity to do so.
Respect your body. Respect your limits. I know it fucking sucks when you’re not able to do the things you could do in the past anymore. It sucks losing that life quality, probably forever. But you can make your suffering a bit more bearable. Please do so.
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consolecadet · 13 days
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Safe Foods
2024
Aluminum foil, stone clay, Hershey’s kisses wrappers and plumes, found objects, cardstock, spray paint, acrylic paint, glass microbead paint
inspired by David Seltzer, Sea Salt/Lemon Sage
With celiac disease, every meal is a risk. Gluten hides everywhere, from restaurant griddles to soy sauce and licorice. Since my diagnosis, I’ve identified “safe foods” I can always trust not to set off an intestine-destroying immune response: whole fruit, plain potato chips, most hot dogs, Hershey’s chocolate. When I’m stranded and hungry, I look for them. Drawing on the bright colors and abstract inedibility of David Seltzer’s Sea Salt/Lemon Sage, I made my safe foods easier to find by rendering them in an ANSI-inspired worksite safety palette. Use the headlamp for the full high-visibility experience.
Exciting news: This sculpture is on display at the ArtsWorcester gallery show Feast: Call and Response with the Fitchburg Art Museum through April 21, 2024.
Even more exciting news: the Fitchburg Art Museum selected it, along with nine other pieces from the show, to exhibit this summer!
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spoonful116 · 8 months
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Autoimmune disease: because I'm the only one who can kick my ass
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entowoldesigns · 1 year
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I’ve struggled with my health for the last 6 years, and it has only progressively worsened with time. I’ve worked tirelessly, become homeless, had to quit mid-treatment, pulled myself out of homelessness, all the while my health has progessively worsened and I was only able to see doctors and afford groceries with the kindness of my customers, friends and strangers.
The previous apartment was far too expensive, but being selective was not an option as it was at the start of lockdown. This made homelessness all the more restrictive and I had to take what I could get. Thankfully that aforementioned kindness from others and hard work of my own allowed me to move somewhere much more affordable. I feel overwhelmingly grateful for that.
However, my health has continued to deteriorate and I have reached the point that more often than not I am immobilized by my chronic pain and unable to work. I am struggling to make enough to pay bills, let alone save for all the medical needs I have. This has led me to the realization that I wont have independent financial stability until my health is stable. I am not able to do this on my own so I am asking for help.
I have started a GFM [therein is further information regarding my health issues] The total IS NOT the goal, it is only the worst case out of pocket cost scenerio. Even getting some of my pain alleviated would make a tremendous difference, so the goal is to acheive any amount of the treatments and surgeries listed taken care of.
In addition to the GFM, I am also taking commissions, and my friend Zae and I host Streams one Wednesday out of each month where I offer discounted commissions, YCHs, and art raffles from amazing reputable artists who have generously donated their time and skill. I would love to welcome new folks into our stream, as we always have a lot of fun.
[Go Fund Me]
[Twitch: Commissions, YCHs, Raffles]
All that being said, if you feel so inclined and can do so safely, please donate. Any amount helps, and if you can’t I would be immensely grateful if you could share the post. Thank you so much for your time.
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destiel-news-channel · 6 months
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Positive news!
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[Image ID: The Destiel Confession meme edited so Dean answers 'scientists have found a mechanism to reverse auto-immune diseases' to Castiels 'I love you'. /End ID]
This is indeed very good news! Hopefully the clinical testing is successful and they'll be able to make an affordable 'reverse vaccine'!
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