#the year i was diagnosed with lupus

[shehsart]

I seem to have contracted chicken pox from work somehow it's been a wild few days.

[ricketyhandss]

I’m stopping by my old job before I leave for college tomorrow to say bye to my ex coworkers who I was rly close with but I’m scaredd

[tombraiderrocker]

If they claim they can cure your condition that you have been told is incurable, run. If they claim they cured themselves, run. If they claim they have cured everything from cancer to lupus holistically, run. If they claim you have to buy only supplements from them, run. If they claim they that only thing that will cure is x but x costs tons of money, run. If they refuse to run tests or address your diagnosed conditions before insisting you do an expensive treatment not covered by insurence, run. If they offer a one size fits all treatment/cure, run.

I have been scammed by "holistic" and "naturalistic" people before as a chronically ill person. In fact it was an actual doctor who went to medical school who scammed me for years. So watch out. If it seems too good to be true it probably is.

[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

[hussyknee]

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.

[inthenameofloveforthesakeofpower]

iamhalsey: Thank you guys for the unbelievable amount of love for “The End” and the support you’ve shown me since its release. I realize everyone is catching up with news I’ve held in for a very long time, and I wasn’t sure how much I wanted to share. You’ve all been so kind so I want to share a bit more. In 2022, I was first diagnosed with Lupus SLE and then a rare T-cell lymphoproliferative disorder. Both of which are currently being managed or in remission; and both of which I will likely have for the duration of my life. After a rocky start, I slowly got everything under control with the help of amazing doctors. After 2 years, I’m feeling better and I’m more grateful than ever to have music to turn to. I can’t wait to get back where I belong: With you all 🤍 Singing and screaming my heart out.

[beesmygod]

What's some stuff that excite you ie the mental health field right now?

"excite" isnt the right word but you know what i mean when i say this is interesting: there's a field of mental health research revolving around the theory that some psychosis or dementia are caused by autoimmune disorders.

here's a crazy story about a woman who suffered from catatonic schizophrenia for 20 years, was diagnosed and treated for lupus, and then shockingly began to recover from her catatonic symptoms.

alzheimers might be the same sort of problem.

its a novel re-framing now that genetic testing turned out to be a dead-end: what if its not determined by whether or not you have the "crazy gene", but whether or not you are susceptible to autoimmune disorders that would cause the immune system to turn on the brain

[h-f-k]

iamhalsey Thank you guys for the unbelievable amount of love for “The End” and the support you’ve shown me since its release. I realize everyone is catching up with news I’ve held in for a very long time, and I wasn’t sure how much I wanted to share. You’ve all been so kind so I want to share a bit more. In 2022, I was first diagnosed with Lupus SLE and then a rare T-cell lymphoproliferative disorder. Both of which are currently being managed or in remission; and both of which I will likely have for the duration of my life. After a rocky start, I slowly got everything under control with the help of amazing doctors. After 2 years, I’m feeling better and I’m more grateful than ever to have music to turn to. I can’t wait to get back where I belong: With you all 🤍 Singing and screaming my heart out.

[hlseydaily]

iamhalsey: Thank you guys for the unbelievable amount of love for “The End” and the support you’ve shown me since its release. I realize everyone is catching up with news I’ve held in for a very long time, and I wasn’t sure how much I wanted to share. You’ve all been so kind so I want to share a bit more. In 2022, I was first diagnosed with Lupus SLE and then a rare T-cell lymphoproliferative disorder. Both of which are currently being managed or in remission; and both of which I will likely have for the duration of my life. After a rocky start, I slowly got everything under control with the help of amazing doctors. After 2 years, I’m feeling better and I’m more grateful than ever to have music to turn to. I can’t wait to get back where I belong: With you all 🤍 Singing and screaming my heart out.

[wheelie-sick]

so, I've never watched House

but I've heard enough bad jokes about how "it's never lupus" when I've told people I have lupus that I am way too familiar with the joke

and I just don't understand why the show chose lupus as the subject of the joke? they treat it as if lupus is over diagnosed, something that anyone with mystery symptoms is labeled with. yes, lupus causes a large variety of symptoms, but it is a diagnosis that is extensively backed up with objective findings in clinical observation, lab work, and radiologic imaging. I feel like it's really given people this perception that lupus is a diagnosis anyone and everyone can get.

to be diagnosed with lupus you need at least two objective clinical findings, and if you have anything other than class III or IV lupus nephritis then you need at least three objective clinical findings. even then, rheumatologists will often refuse a diagnosis until more objective clinical findings are seen. lupus. is not. an. easy. diagnosis. to get.

lupus is also far from the first thing suggested as a diagnosis. on average it takes 6 years from disease onset to get a diagnosis. this is often with severe symptoms and can leave people with lifelong organ damage or even shorten lifespans because only doctors with a trained eye know how to spot lupus.

like there's just this huge misconception about lupus floating around because of this show and while other people might not realize it exists or might dismiss it as just "being a joke" I experience its effects all the time. it has genuinely shaped people's perception of my disease in an inaccurate and harmful way.

it is lupus.

[merlotdom]

House MD is just; guy walks in with a cough, House looks at his socks and diagnoses him with breastcancer. Let's just give him this chemo treatment without confirming the diagnosis - worst case scenario this will give him ten more symptoms and strip his immune system bare. Surprise, it gives him ten more symptoms and strips his immune system bare. I guess we have to peel off the entirety of his skin so we can make sure it's not a parasite that can only be found on Mount Everest at exactly 3:16 pm on January 5th 2003.

Four experimental drugs later they finally get a test result back and it's pneumonia. Thank you Dr. House for ruling out lupus before handing me, a 40 year old man, my cough syrup.

[notawomanagod]

iamhalsey: Thank you guys for the unbelievable amount of love for “The End” and the support you’ve shown me since its release. I realize everyone is catching up with news I’ve held in for a very long time, and I wasn’t sure how much I wanted to share. You’ve all been so kind so I want to share a bit more. In 2022, I was first diagnosed with Lupus SLE and then a rare T-cell lymphoproliferative disorder. Both of which are currently being managed or in remission; and both of which I will likely have for the duration of my life. After a rocky start, I slowly got everything under control with the help of amazing doctors. After 2 years, I’m feeling better and I’m more grateful than ever to have music to turn to. I can’t wait to get back where I belong: With you all 🤍 Singing and screaming my heart out.

[christinesficrecs]

Hey Christine! Hope your holidays are going well, I was wondering if you could help me find a Sterek fic? It’s a sour Derek and stiles being hockey players and stiles gets diagnosed with lupus. Stiles and Derek are also hiding their relationship from the team Im pretty sure. I can’t really remember much else 😅 thanks!

Hey! Happy Holidays!! 🥳 I think you're looking for this one.

Two Minutes for Holding by captaintinymite (augopher) | 121.4K | Explicit

There were three things college hockey players Derek Hale and Stiles Stilinski knew for certain. 1) Their lives revolved around hockey, 2) They were madly in love, and 3) Derek was so far in the closet he might never find his way out.

They'd been together for two years now, and for two years they'd been a secret with only a few people knowing about them. Yet Derek's fear kept them from moving forward: fear of his family's rejection, fear of his sexuality tanking his father's career, fear of the rampant homophobia in professional sports. The ruse was growing thin.

Something had to give.

Or: The story of how one epic NCAA Championship run and college, served as the backdrop for some of life's great hardships.

[mermaidinthecity]

iamhalsey: Thank you guys for the unbelievable amount of love for “The End” and the support you’ve shown me since its release. I realize everyone is catching up with news I’ve held in for a very long time, and I wasn’t sure how much I wanted to share. You’ve all been so kind so I want to share a bit more. In 2022, I was first diagnosed with Lupus SLE and then a rare T-cell lymphoproliferative disorder. Both of which are currently being managed or in remission; and both of which I will likely have for the duration of my life. After a rocky start, I slowly got everything under control with the help of amazing doctors. After 2 years, I’m feeling better and I’m more grateful than ever to have music to turn to. I can’t wait to get back where I belong: With you all 🤍 Singing and screaming my heart out.

[houseofchronicpain]

Got to see an Internal Medicine specialist yesterday and after a 75 minute appointment:

I probably do not have lupus but i might

I probably do not have rheumatoid arthritis but i might

I probably DO have ehlers danlos but canada doesn't care enough about it to diagnose me (cool cool cool)

I probably DO have POTS

I probably DO have reynauld's

I am definitely Fat (i already knew this one)

I am definitely too depressed (which is funny to me because i have absolutely been way more depressed in my life)

No direction mention of Long Covid but some hinting

I am going to do tests for my heart health

i am going to maybe try that weight medicine that's around

She doesn't know what is going on, but it might be a lot of things but is probably mostly the ehler's danlos, but we can only treat the symptoms apparently because Reasons

It might take a few years but hopefully i can feel a bit better eventually maybe

Honestly, a better and more productive appointment than I've had in a while but still like...

[soupandspoonies]

So I just recently saw one of my doctors and it made me start thinking again about internal battles I have to have with myself over my health.

I've been looking for answers and solutions for my illnesses for upwards of 9 years now and throughout that I often find myself wishing they'd just diagnose me to get it over with.

Seeing a rheumatologist and hoping they just tell me it's rheumatoid arthritis or lupus so that I actually have an answer ends up making me feel pretty guilty - like I need to have something wrong with me. I know it's just me looking for answers, but I can't help but feel bad about it.

Does anybody else have this experience? Hoping you just have something wrong with you so that you finally have an answer, no matter how bad it is? How do you deal with it? I've been doing this for a long time and I still don't really know how to deal with it.

I hope people have been well,

Soup :)