Famous people diagnosed with neurological diseases

[NelliePledge]

An interview in British Vogue with American actress Selma Blair, who has MS.

It can’t be an easy story to tell. Born into a Jewish upper-middle-class family in Michigan, by the time Blair was seven she had lost use of her right eye, left leg and her bladder. Her mother, a judge, feared Blair had cancer, but she was a complex figure (“though she loved me very much”, Blair says) and at times became frustrated with her daughter’s extra needs. Looking back, it was the ravages of undiagnosed juvenile MS, but at the time Blair was labelled an attention-seeker and dismissed by doctors. “If you’re a boy with those symptoms, you get an MRI. If you’re a girl, you’re called ‘crazy’.”



As a child, Blair would wake up in the night laughing hysterically. As an adult, the darker side hit: waves of uncontrollable crying that came out of nowhere. “I just thought I was a hugely emotional person,” she confides. In reality, her undiagnosed MS had damaged her frontal lobe – the equivalent of a brain injury. Blair would not get a diagnosis for another 40 years. “I looked like a ‘normal’ girl to them,” she says, “but I was Disabled this whole time.”

(...)

The past few years have seen Blair’s MS go into remission – thanks, in part, to the hematopoietic stem cell transplantation she received in 2019 – but her condition fluctuates. On a good day, she is laughing and out of the house with friends. On a bad day, she is vomiting, collapsed in bed. “Sometimes I can’t eat for days, and then when I can relax I overdo it and all the hunger rushes in,” she confides a few days later, settled back at home in LA. “I require more sleep than a bear in winter.”​

By Frances Ryan

 

[Sid]

SPS sounds harrowing. I bet many of them get diagnosed with FND. Neurology seems to struggle with inconsistent or variable symptoms.

 

[rvallee]

An interview in British Vogue with American actress Selma Blair, who has MS.

It can’t be an easy story to tell. Born into a Jewish upper-middle-class family in Michigan, by the time Blair was seven she had lost use of her right eye, left leg and her bladder. Her mother, a judge, feared Blair had cancer, but she was a complex figure (“though she loved me very much”, Blair says) and at times became frustrated with her daughter’s extra needs. Looking back, it was the ravages of undiagnosed juvenile MS, but at the time Blair was labelled an attention-seeker and dismissed by doctors. “If you’re a boy with those symptoms, you get an MRI. If you’re a girl, you’re called ‘crazy’.”



As a child, Blair would wake up in the night laughing hysterically. As an adult, the darker side hit: waves of uncontrollable crying that came out of nowhere. “I just thought I was a hugely emotional person,” she confides. In reality, her undiagnosed MS had damaged her frontal lobe – the equivalent of a brain injury. Blair would not get a diagnosis for another 40 years. “I looked like a ‘normal’ girl to them,” she says, “but I was Disabled this whole time.”

(...)

The past few years have seen Blair’s MS go into remission – thanks, in part, to the hematopoietic stem cell transplantation she received in 2019 – but her condition fluctuates. On a good day, she is laughing and out of the house with friends. On a bad day, she is vomiting, collapsed in bed. “Sometimes I can’t eat for days, and then when I can relax I overdo it and all the hunger rushes in,” she confides a few days later, settled back at home in LA. “I require more sleep than a bear in winter.”​

This is what it means for MS to still be dismissed as psychosomatic. It doesn't matter if it doesn't apply much to diagnosed cases, it was always about misdiagnosis, about being gaslit, sometimes for years, before a diagnosis, if it doesn't make it impossible. This hasn't changed at all, for anyone who doesn't have a textbook case, it's probably going to get worse than ever because of all the craze from the golden age of psychosomatics.

It doesn't make it OK if someone gets diagnosed later. This should always have been an unacceptable practice, and yet it is clearly a standard that is very beloved.

 

[Mij]

Sufjan Stevens: Songwriter 'cannot walk' after being diagnoses with a rare disease
Sufjan Stevens: Songwriter 'cannot walk' after being diagnosed with rare disease

In a rare Instagram post, Sufjan Stevens said he had been diagnosed with Guillain-Barre Syndrome

“Last month I woke up one morning and couldn’t walk. My hands, arms and legs were numb and tingling and I had no strength, no feeling, no mobility,” he wrote.

https://www.washingtonpost.com/wellness/2023/09/20/sufjan-stevens-guillain-barre-syndrome/

 

[Mij]

Merged thread

Selma Blair Says Her MS Was Misdiagnosed for Years as Menstrual Issues

Selma Blair told Meet the Press that her multiple sclerosis went undiagnosed for years due to “older male doctors who really probably did not know the intricacies of a girl.” The actor announced her MS diagnosis in 2018, and is currently in remission. “Everything does not need to be blamed on menstruation or something,” she told Kristen Welker.

Blair had many neurological symptoms that she and doctors chalked up to lady stuff. “I have prefrontal [brain] damage that would cause, you know, hysterical crying and laughing,” she said. “And I just thought, ‘Wow, I’m just that wild one that wakes up in the middle of the night, like, waking myself up laughing hysterically, or sobbing, or in front of people just very moody maybe.” Blair says she was on heavy antidepressants and started drinking very early, things she now sees were attempts to regulate her undiagnosed MS symptoms. Blair says she began displaying symptoms of the disease as early as age 7.

https://www.vulture.com/2023/11/selma-blair-multiple-sclerosis-medical-gaslighting.html

 

[SNT Gatchaman]

Also Selma Blair's public plea after experiencing 'hell on Earth' for decades before diagnosis

Symptoms, she says, that included unbearable pain doctors dismissed – and one did so with the suggestion she get a boyfriend for them to improve.

"I just cried," Blair, 51, told Meet the Press' Kristen Welker in a new interview.

"I had no capability to process. 'What am I supposed to do with this information?' I knew the pain was real. I thought it was," she continued.

"It was a gender bias, a lot of it, because there would be a boy in my grade that would go in for the exact same chronic headache and fever, and he is in surgery and a MRI within the week," Blair said.

"I was never given a MRI even though I always had headaches and fevers and balance [problems]. But they just said, 'Oh, just dramatic.'"

She then issued a plea to medical professionals on behalf of women, urging them to listen to all patients who report chronic symptoms.

"I really wish they would listen," Blair said. "Nothing was taken seriously."

 

[Sean]

I have sometimes wondered how different the ME story could have been if the gender balance was inverted.

 

[rvallee]

I have sometimes wondered how different the ME story could have been if the gender balance was inverted.

Judging from how GWI is unfolding exactly as poorly, I don't think it would have made any difference. There is plenty of sexist bigotry in medicine, but there is more than enough ableist bigotry to make up for it when it doesn't apply.

Blair's case is really telling of how the discrimination and failure underlying psychosomatic ideology has evolved: MS may no longer be considered psychosomatic, but people with MS are still just as discriminated and psychologized until there is a test confirming their diagnosis. The only difference here is technology and the economics that technological progress brings. The human element is the exact same as in the time of "hysterical paralysis", the clinical failure is identical, the culture hasn't changed.

Same with peptic ulcers, although the barrier is even lower, but you can be pretty much certain that a huge number of people with "functional" GI problems have undiagnosed ulcers. There is never any recognition or accountability for mistakes, so things don't change. In medicine, only technology really matters. The rest just stagnates.

 

[Mij]

Good gracious. Céline Dion has given interviews lately concerning her diagnosis of Stiff Person Syndrome. The years of not having a diagnosis. The amount of Valium she had to take to relax her muscles that could have killed her. All the money in the world isn't enough for cure or treat rare complex diseases.

 

[Mij]

https://twitter.com/user/status/1836116545971589259


Celine Dion got her voice back thanks to a repurposed drug!

Diagnosed with stiff person syndrome, a rare disease that took away her ability to walk, talk, and sing, she fought an inspiring battle to regain her health. Through intense physical therapy and the use of IVIg, a repurposed drug originally developed in 1952, she was able to make a remarkable recovery. This powerful example of using IVIg for stiff person syndrome is exactly why @EveryCure exists—to uncover more uses like this and ensure that every patient can benefit from existing medicines.

 

[Mij]

I was wondering how she was able to perform her song during the Paris Olympics. Her recovery was quite remarkable.