#autoimmine disease

[spooniestrong]

#spooniestrong #spoonie #disability #chronic illness #chronic pain #ableism #disabled #autoimmine disease #autoimmune

[cosmiccripple]

if you are sick, i don't give a shit if it's just a cold, wear a FUCKING MASK!!!!!!!!!!!!!

#covid isn't over #wear a fucking mask #physical disability #actually disabled #disability #invisible disability #autoimmine disease #autoimmune disorder #chronically ill #crip punk #physically disabled #cpunk #cripplepunk #cripple punk #angry cripple

[reasonsforhope]

Story from the Washington Post here, non-paywall version here.

Washington Post stop blocking linksharing and shit challenge.

"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...

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 [for lupus] — and more than two decades trapped in her mind — April woke up.

The awakening of April — and the successful treatment of other people with 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.” ...

Waking up after two decades

The medical team set to work counteracting April’s rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus...

The regimen is grueling, requiring a month-long break between each of the six rounds to allow the immune system to recover. But April started showing signs of improvement almost immediately...

A joyful reunion

“I’ve always wanted my sister to get back to who she was,” Guy Burrell said.

In 2020, April was deemed mentally competent to discharge herself from the psychiatric hospital where she had lived for nearly two decades, and she moved to a rehabilitation center...

Because of visiting restrictions related to covid, the family’s face-to-face reunion with April was delayed until last year. April’s brother, sister-in-law and their kids were finally able to visit her at a rehabilitation center, and the occasion was tearful and joyous.

“When she came in there, you would’ve thought she was a brand-new person,” Guy Burrell said. “She knew all of us, remembered different stuff from back when she was a child.” ...

The family felt as if they’d witnessed a miracle.

“She was hugging me, she was holding my hand,” Guy Burrell said. “You might as well have thrown a parade because we were so happy, because we hadn’t seen her like that in, like, forever.”

“It was like she came home,” Markx said. “We never thought that was possible.”

...After April’s unexpected recovery, the medical team put out an alert to the hospital system to identify any patients with antibody markers for autoimmune disease. A few months later, Anca Askanase, a rheumatologist and director of the Columbia Lupus Center,who had been on April’s treatment team, approached Markx. “I think we found our girl,” she said.

Bringing back Devine

When Devine Cruz was 9, she began to hear voices. At first, the voices fought with one another. But as she grew older, the voices would talk about her, [and over the years, things got worse].

For more than a decade, the young woman moved in and out of hospitals for treatment. Her symptoms included visual and auditory hallucinations, as well as delusions that prevented her from living a normal life.

Devine was eventually diagnosed with schizoaffective disorder, which can result in symptoms of both schizophrenia and bipolar disorder. She also was diagnosed with intellectual disability.

She was on a laundry list of drugs — two antipsychotic medications, lithium, clonazepam, Ativan and benztropine — that came with a litany of side effects but didn’t resolve all her symptoms...

She also had lupus, which she had been diagnosed with when she was about 14, although doctors had never made a connection between the disease and her mental health...

Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regime similar to what April had been given a few years prior. By October, there were already dramatic signs of improvement.

“She was like ‘Yeah, I gotta go,’” Markx said. “‘Like, I’ve been missing out.’”

After several treatments, Devine began developing awareness that the voices in her head were different from real voices, a sign that she was reconnecting with reality. She finished her sixth and final round of infusions in January.

In March, she was well enough to meet with a reporter. “I feel like I’m already better,” Devine said during a conversation in Markx’s office at the New York State Psychiatric Institute, where she was treated. “I feel myself being a person that I was supposed to be my whole entire life.” ...

Her recovery is remarkable for several reasons, her doctors said. The voices and visions have stopped. And she no longer meets the diagnostic criteria for either schizoaffective disorder or intellectual disability, Markx said...

Today, Devine lives with her mother and is leading a more active and engaged life. She helps her mother cook, goes to the grocery store and navigates public transportation to keep her appointments. She is even babysitting her siblings’ young children — listening to music, taking them to the park or watching “Frozen 2” — responsibilities her family never would have entrusted her with before her recovery.

Expanding the search for more patients

While it is likely that only a subset of people diagnosed with schizophrenia and psychotic disorders have an underlying autoimmune condition, Markx and other doctors believe there are probably many more patients whose psychiatric conditions are caused or exacerbated by autoimmune issues...

The cases of April and Devine also helped inspire the development of the SNF Center for Precision Psychiatry and Mental Health at Columbia, which was named for the Stavros Niarchos Foundation, which awarded it a $75 million grant in April. The goal of the center is to develop new treatments based on specific genetic and autoimmune causes of psychiatric illness, said Joseph Gogos, co-director of the SNF Center.

Markx said he has begun care and treatment on about 40 patients since the SNF Center opened. The SNF Center is working with the New York State Office of Mental Health, which oversees one of the largest public mental health systems in America, to conduct whole genome sequencing and autoimmunity screening on inpatients at long-term facilities.

For “the most disabled, the sickest of the sick, even if we can help just a small fraction of them, by doing these detailed analyses, that’s worth something,” said Thomas Smith, chief medical officer for the New York State Office of Mental Health. “You’re helping save someone’s life, get them out of the hospital, have them live in the community, go home.”

Discussions are underway to extend the search to the 20,000 outpatients in the New York state system as well. Serious psychiatric disorders, like schizophrenia, are more likely to be undertreated in underprivileged groups. And autoimmune disorders like lupus disproportionately affect women and people of color with more severity.

Changing psychiatric care

How many people ultimately will be helped by the research remains a subject of debate in the scientific community. But the research has spurred excitement about the potential to better understand what is going on in the brain during serious mental illness...

Emerging research has implicated inflammation and immunological dysfunction as potential players in a variety of neuropsychiatric conditions, including schizophrenia, depression and autism.

“It opens new treatment possibilities to patients that used to be treated very differently,” said Ludger Tebartz van Elst, a professor of psychiatry and psychotherapy at University Medical Clinic Freiburg in Germany.

In one study, published last year in Molecular Psychiatry, Tebartz van Elst and his colleagues identified 91 psychiatric patients with suspected autoimmune diseases, and reported that immunotherapies benefited the majority of them.

Belinda Lennox, head of the psychiatry department at the University of Oxford, is enrolling patients in clinical trials to test the effectiveness of immunotherapy for autoimmune psychosis patients.

As a result of the research, screenings for immunological markers in psychotic patients are already routine in Germany, where psychiatrists regularly collect samples from cerebrospinal fluid.

Markx is also doing similar screening with his patients. He believes highly sensitive and inexpensive blood tests to detect different antibodies should become part of the standard screening protocol for psychosis.

Also on the horizon: more targeted immunotherapy rather than current “sledgehammer approaches” that suppress the immune system on a broad level, said George Yancopoulos, the co-founder and president of the pharmaceutical company Regeneron.

“I think we’re at the dawn of a new era. This is just the beginning,” said Yancopoulos."

-via The Washington Post, June 1, 2023

#mental illness #schizophrenia #schizoaffective #psychotic disorders #psychology #neurology #autoimmune #autoimmine disease #neuroscience #medical news #medical research #catatonia #immunotherapy #immune system #clinical trials #good news #hope

[azztiph]

Sometimes u just need to sob and scream and cry and bitch about ur disability

I think a lot of people feel like they need to be at completely at peace with their disability

And you don’t!

Be mad be sad be pissed off!

#disabled #disabled problems #disability #ehlers danlos syndrome #immunocompromised #rheumarthritis #chronic illness #autoimmine disease #angry cripple #this post is about physically disabled people #autoimmune #rheumatoid arthritis #cripple punk

[metaphorically-speaking]

“are u sure ur not just a hypochondriac?” and so what if i am. i have an autoimmune disorder. any sickness could be deadly to me. i am allowed to worry about my health!!!! im allowed to be afraid of illness!!! it could kill me!!!!!

#disability #autoimmine disease #cpunk #cripple posting #like so fucking what if i excessively worry about my health. #you would too if you had my symptoms

[classycookiexo]

#autoimmine disease #honestly #stress #idc #women

[longreads]

A Life Without Eating 

“Inflammation from Crohn’s disease had connected the tissues of my small intestine and my bladder together via fistula, and I did not want to pee out a roast chicken.”

Eating is about more than just nutrition. Eating makes us human. Read Andrew Chapman’s powerful new essay on living without food here. 

#longreads #crohn's disease #crohn's problems #autoimmine disease #autoimmune #writing #food #starvation #nonfiction

[stardustinmyhands]

#chronic illness #autoimmine disease #chronic life #spoonie

[tumble-tv]

Having arthritis at 17 is funny, because I tell people and they're like, "oh, my grandma has that! she takes X, Y, Z and it helps her a lot!" Your grandma and I do not have the same arthritis. Her yoga and good vibes are not going to help me.

Then there's the whole thing of finding rheumatologists near me. There are only 2 in my general vicinity. 2 that take pediatric patients. The rheumatologist I am not currently seeing is about an hour away, so when I tell people about how awful my rheumatologist is at the moment with medications and care, they always say that i should go to another doctor when I literally cannot.

Then there's the whole thing of my doctors refusing to help me with my chronic pain because it's apparently all because of my arthritis, which has been in remission for 4 years now, so no, it's not my arthritis. Arthritis medications will not help my pain, and they refuse to acknowledge that

#little bit of a rant #juvenile arthritis #arthritis #other chronic illness bs #chronic disability #chronic disease #chronicpain #chronically ill #disabled #chronic illness #disablity #chronic pain #invisible illness #physical disability #invisible disability #disability #physically disabled #autoimmine disease #invisible disease #cripple life #cripple problems #crip punk #cripple punk

[cosmiccripple]

i'm so fucking glad that ableds find it hilarious when they pass their colds around to others. SO GLAD. /s

bet you didn't know your fucking cold can land me permanently worse or taking a long time to recover or even spending time in the hospital.

your cold is only inconsequential to you.

be fucking considerate and wear a goddamn mask around people when you're sick. (or even better, wear one all the time!!!)

#physical disability #actually disabled #disability #invisible disability #chronically ill #crip punk #cripplepunk #cripple punk #cpunk #c punk #angry cripple #physically disabled #autoimmine disease #immunocompromised #covid isn't over #wear a fucking mask #disabled #disabilities #chronic illness #chronic disability

[inkdandimpulsive]

Shout out to disabled people who are, ya know, existing with symptoms - whatever they may be. Who are exhausted/fatigued some (or all) days. Who are in pain. Who live in a world that doesn’t understand them, a world that isn’t built for them.

I hope you have the time to cuddle your favorite stuffed animal. I hope you watch an amazing episode of your favorite show. I hope you meet a doctor that smiles and sees you and works with you. Much love to you all.

#chronic illness #autoimmine disease #autoimmune #chronic fatigue #spoonie #chronic pain #spoonie life #chronic migraine #sjogrenssyndrome #raynauds #postural orthostatic tachycardia syndrome #erythromelalgia #nerve pain #gastroparesis #tmj disorder #disabled #ableism #disability

[azztiph]

Needing a mobility aid but being unable to get one because of ur parents is actually so frustrating!

Sorry to all the people who r too young to get one on their own

Who can get one, but face too much pressure from their families not to

Who r told that getting a mobility aid is basically giving up

And last but not least!

One big FUCK YOU to ur ableist family

#disabled problems #disabled #disability #ehlers danlos syndrome #rheumarthritis #autoimmine disease #this post is about physically disabled people #cripple punk #cripple shit #cripple posting

[50stressballs]

Yet again stuck in the pattern of

Works out to help my fatigue -> experiences joint pain because I was too rough -> takes a day to rest because of my joint pain -> experiences fatigue because I haven’t been working out -> works out to help my fatigue -> becomes the chronically ill equivalent of Sisyphus, trapped in a self inflicted loop of being tired and achey all the time

#disabled #chronic illness #chronic pain #chronic fatigue #joint pain #disability #autoimmine disease #fatigue #I don’t think this is a #vent #but I’ll tag that just incase

[webkinzpossum]

REQUESTING MUTUAL AID

Black queer disabled DID system in need of assistance getting necessary medications.

Current goal: $500

Any and all assistance is appreciated. Includes sharing even if you can't donate. Thank you for your time <3

CashApp: $11kem5

PayPal: 11kem5

Venmo: kem115

#mutual aid #mutual aid post #DID system #Black DID system #chronically ill #chronic illness #disabled #POTS #postural orthostatic tachycardia syndrome #fibromyalgia #autoimmine disease #raynauds #rheumatoid arthritis #chronic migraine #chronic fatigue syndrome #me cfs #me/cfs #cfs/me #nerve pain #actually cptsd #actually bipolar #actually anxious #actually autistic #actually did #actually dissociative #queer #bipoc #qpoc #trans #nonbinary

[justseveralowls]

Reminder to my fellow spoonie/ disabled humans

-your mobility aids are not ruining you aesthetic

-your conditions do not make you a burden

-you are allowed to be angry

- you are allowed to grieve

- you are alllowed to seek joy

-you are allowed to make your life easier

-Your assistive devices are not weird or ugly they help you live and experience the world

-You are lovable

-you are valued

-Struggling or having flare ups is not a failure

- You dont need to explain yourself to anyone

- Your succeses are amazing even if they dont happen in the typical form or on a certain timeline

- You are allowed to take up space

- You dont have to be productive or inspiring 

- You aren’t alone

#spoonies #spoonie support #spoonie #spoonie remiders #chronic illness #chronically ill #chronically sick #disabled #disability #disability support #actually epileptic #ehlers danlos syndrome #fibrostrong #pots support #mobility aids #autoimmine disease #chronic fatigue #chronic pain #assistive devices #affirmations #gentle reminders #invisible illness #you are not alone #mine #I have classical EDS with a bunch of comorbities and this shit is hard #I look 16 but feel 70 #you are worthy #you are valid #also fuck seizures

[melodymorningdew]

Ableist language content warning:

Just a PSA: Many people believe they aren't ableist but as soon as someone's disability inconveniences them in the slightest, they're immediately up in arms about how horrible this person is for being disabled.

So tired of hearing "you have to help yourself"

"Have you tried [insert completely unhelpful tip]"

"You can't expect the world to bend to your will." (When asking for accommodations)

"You don't LOOK disabled."

"Well you did ___ yesterday why can't you do it today?"

"You need to stop making excuses."

"You complain too much."

"You can do anything if you put your mind to it."

"You just have to force yourself to work you have no choice."

"Just go home if you're going to act like that [my legs collapsing beneath me/fainting/saying I'm having a panic attack]" (same people who tell me I just need to push through)

"Oh that person is being so rude" (when they are overwhelmed and unable to carry on a normal masked conversation bc they are overwhelmed)

"ADHD isn't an excuse to be late or forget things you can set alarms and have planners"

I and many others are rightfully pissed off at being dismissed and condescended to and belittled and stomped into the dirt EVERY OTHER DAY. (Not exaggerating.)

#disabled #chronic illness #chronically ill #chronic pain #ableist language cw #chronic disability #chronically fatigued #degenerative disease #autistic life #autistic furry #autoimmine disease #autoimmune #fibromyalgia #autism #adult adhd #adhd #ableism #hypermobile ehlers danlos #ehlers danlos awareness #ehlers danlos zebra #ehlers danlos syndrome #ehlers danlos problems #part time wheelchair user #wheelchair #angry disableds #disabilties #invisible disability #invisible illness #spoonie #spoons