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Sufjan Stevens is 'learning to walk again' due to Guillain-Barré syndrome. What is it?

The "Mystery of Love" singer shared that the rare autoimmune disorder left him hospitalized for two weeks.

Sufjan Stevens revealed he's been immobilized due to Guillain-Barré syndrome. (Photo via Getty Images)
Sufjan Stevens revealed he's been immobilized due to Guillain-Barré syndrome. (Photo via Getty Images)

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.

Sufjan Stevens is opening up about what left him hospitalized for two weeks.

On Wednesday, the "Mystery of Love" singer, 48, took to social media to share a candid update with his fans about why he hasn't been able to participate in promoting his upcoming album, "Javelin." In his lengthy post, he explained how he suddenly woke up one morning feeling numb in his limbs and unable to walk.

The scary moment led to his brother driving him to the emergency room where, after multiple tests including MRIs, spinal taps and CT scans, neurologists ultimately diagnosed him with Guillain-Barré syndrome.

"Very scary, but [treatment] worked," he wrote in his post's caption. "I spent about two weeks in med/surg stuck in a bed, while my doctors did all the things to keep me alive and stabilize my condition. I owe them my life.

"I am now undergoing intensive physical therapy/occupational therapy, strength building etc. to get my body back in shape and to learn to walk again. It's a slow process, but they say I will 'recover.' It just takes a lot of time, patience and hard work."

The Detroit-born artist shared that he remains "hopeful" despite his diagnosis, since he's only in his second week of recovery but things are "going really well."

"I'm committed to getting better, I'm in good spirits, and I'm surrounded by a really great team," he penned. "I want to be well!"

But what exactly is this rare disorder that's impacted other stars like TV personality Jenna Jameson, actor Andy Griffith and Canadian hockey player Mike Egener? Read on to learn more about Guillain-Barré syndrome.

What is Guillain-Barré syndrome?

Guillain-Barré syndrome is a rare autoimmune disorder. According to the World Health Organization (WHO), it's a condition that causes a person's immune system to attack parts of their peripheral nervous system. In turn, the syndrome can affect the nerves that control muscle movement, as well as those that indicate pain, temperature and the sense of touch.

While people of all ages can be affected, it tends to be more common among adults, particularly those who are male. According to the Centers for Disease Control and Prevention, Guillain-Barré syndrome affects approximately one in 100,000 people.

What are the symptoms associated with Guillain-Barré syndrome?

Most often, Guillain-Barré syndrome begins with weakness and tingling, like pins and needles, in both legs, sometimes leading to the arms, face and upper body.

According to neurologist and University of Alberta professor Dr. Zaeem Siddiqi, the symptoms are commonly symmetric, meaning they affect both sides of the body at the same time, unlike a stroke that typically influences only one side.

Once a diagnosis is made, the patient is hospitalized for close monitoring of lung function, breathing, motor strength and blood pressure changes.

The National Institute of Neurological Disorders and Stroke called Guillain-Barré syndrome a rapidly progressing disorder, noting that symptoms can increase in intensity over a span of hours to days and weeks. In its most severe state, a person may become paralyzed or lose the ability to speak and swallow. In those cases, they may require admission to intensive care.

Guillain-Barré syndrome is often diagnosed following some kind of infection. (Photo via Getty Images)
Guillain-Barré syndrome is often diagnosed following some kind of infection. (Photo via Getty Images)

What causes Guillain-Barré syndrome?

While the exact cause of Guillain-Barré syndrome is unknown, experts say those who suffer from the disorder typically experience an infection prior to their diagnosis.

"Sixty to 70 per cent of times, we can find a preceding trigger about one to four weeks preceding the onset of neurological symptoms," Siddiqi told Yahoo Canada last year.

The Centers for Disease Control and Prevention reported that two in three people with Guillain-Barré syndrome had diarrhea or a respiratory illness several weeks before developing symptoms. People who have had infections like the flu, cytomegalovirus, Epstein-Barr virus or Zika virus may also develop the disorder.

The WHO indicated that albeit rare, some people may develop Guillain-Barré syndrome after getting certain vaccinations. While the chances of this happening are "extremely low," studies show people are more likely to get the disorder after a flu infection rather than getting a vaccine.

Jenna Jameson told fans last year she was diagnosed with Guillain-Barré syndrome, before doctors ultimately ruled it a misdiagnosis. (Photo by Karwai Tang/WireImage)
Jenna Jameson told fans last year she was diagnosed with Guillain-Barré syndrome, before doctors ultimately ruled it a misdiagnosis. (Photo by Karwai Tang/WireImage)

Can COVID-19 vaccines cause Guillain-Barré syndrome?

Last year, Jenna Jameson stipulated that she did not develop Guillain-Barré syndrome as a result of a COVID-19 vaccination, as she "did not get the jab or any jab." Moreover, doctors eventually decided she was misdiagnosed with the disorder.

Although a rare occurrence, Guillain-Barré syndrome can be seen after COVID-19 infections and in some rare instances, within six weeks after a person receives the vaccine.

In July 2021, the European Medicines Agency listed Guillain-Barré syndrome as a potential side effect of Johnson & Johnson's Janssen vaccine and the AstraZeneca vaccine.

Although the disorder can occur after all formulations, the most cases of the condition linked to vaccination have been with the Janssen and AstraZeneca vaccines because these use a different formulation of the virus, Siddiqi explained.

"If a patient had vaccine-associated GBS in the past, in those patients we would recommend no vaccine, but otherwise almost all patients are recommended to get vaccination for COVID," he added.

COVID infections can cause Guillain-Barré syndrome more often than the COVID vaccine. That's the same case with other illnesses such as the flu. (Image via Getty Images).
COVID infections can cause Guillain-Barré syndrome more often than the COVID vaccine. That's the same case with other illnesses such as the flu. (Image via Getty Images).

How is Guillain-Barré syndrome treated?

While there is no cure for the autoimmune disease, there are two effective treatment options available that can shorten the length of symptoms.

The more common of the two, and the one more readily available in most hospitals, is Intravenous Immunoglobulin therapy (IVIG), which filters antibodies in a donor's blood and then infuses them into a patient with GBS.

Plasma exchange is another treatment that is only available in major Canadian hospitals, according to Siddiqi. It involves removing the liquid portion of the patient's blood, or the plasma, and replacing it with either plasma from a donor or another solution.

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