What to know about Sufjan Stevens’s Guillain-Barre Syndrome diagnosis

Indie-rock singer Sufjan Stevens revealed Wednesday that he is recovering from Guillain-Barré syndrome, a rare autoimmune disorder that has left him unable to walk.

In a statement on his website, Stevens said he has been hospitalized for several weeks because of the condition, which attacks the nerves and could lead to paralysis. He said his brother brought him to a hospital after he started experiencing symptoms that left him immobile.

“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.

He said he went through multiple tests — MRIs, scans, X-rays, spinal taps and more — before he was diagnosed with the autoimmune disorder. He received a treatment — immunohemoglobin infusions for five days — and found that he would recover.

“Very scary, but it worked,” he wrote.

Stevens said he is going through “intensive physical therapy/occupational therapy, strength building” to get his body back in shape so he can walk again.

Recovery might take some time and “hard work,” he said.

“I am working really hard to get back on my feet. I’m committed to getting better, I’m in good spirits, and I’m surrounded by a really great team. I want to be well,” he wrote.

Representatives for Stevens declined to comment when asked if the singer had suffered any other illness before the diagnosis. About 2 in 3 people with Guillain-Barré syndrome had diarrhea or a respiratory illness several weeks before developing symptoms of the disorder, according to the Centers for Disease Control and Prevention.

The health condition left Stevens unable to promote his upcoming album, “Javelin,” which is expected to be released next month. Two songs from the album — “So You Are Tired” and “Will Anybody Ever Love Me?” — have already been released.

The indie-folk artist has crossed over into mainstream pop culture in recent years. He was previously nominated at the 2018 Academy Awards for best original song for the tune “Mystery of Love” for the movie “Call Me by Your Name.” Before that, his song “Chicago” of his 2005 album, “Illinois,” appeared in the film “Little Miss Sunshine,” starring Steve Carrell. It was also the opening theme song for the 2019 Netflix series “The Politician,” and it was used in an episode of the FX show “The Bear.”

The indie-rock star isn’t the only major celebrity musician to experience troubling medical issues. Madonna was hospitalized in June with a serious bacterial infection, causing her to delay her upcoming tour. Bruce Springsteen also postponed shows in September as he began treatment for peptic ulcer disease.

What is Guillain-Barré syndrome?

Guillain-Barré syndrome is a rare neurological disorder in which a person’s immune system mistakenly attacks parts of the nervous system, experts said.

Anyone can develop the syndrome, the CDC said, but it’s more common in adults older than 50. About 3,000 to 6,000 people develop the condition every year in the United States.

It may be caused by an earlier infection

The exact cause of Guillain-Barré syndrome isn’t known, according to the National Institute of Neurological Disorders and Stroke.

It is, however, thought to be caused by a preceding infection or, in rare cases, a vaccination, said William Schaffner, an infectious-disease specialist at Vanderbilt University. In response, antibodies produced by the immune system get misdirected while attempting to fight an invading bacteria or virus and instead attack the nervous system, triggering inflammation of the nerves that can cause progressive muscle weakness and even paralysis.

Guillain-Barré syndrome often develops a week or two after a person is infected with a bacteria called Campylobacter, which causes diarrhea, said Michael Wilson, a neurologist at the University of California at San Francisco specializing in infectious and autoimmune syndromes of the central nervous system.

Symptoms range from weakness to paralysis

In mild cases, Guillain-Barré syndrome causes only some weakness starting at the feet and legs, and then advancing up the body to the torso and arms, Schaffner said. Sometimes, however, symptoms can start in the upper body and move downward.

A person may notice it is difficult to climb up stairs or to walk, for example.

In some people, the symptoms can get progressively worse, Wilson said. “It’s a syndrome in which the immune system gets triggered to attack the peripheral nerves,” he said. “In severe cases, people may need intubation because they’re so weak they can’t breathe on their own.”

The symptoms can progress over hours, days or weeks, the CDC said.

The condition should be diagnosed quickly because “people can go from some mild tingling in their legs to, a few hours later, they’re paralyzed,” Wilson said.

Some people have died of the syndrome, the CDC said.

Most people with Guillain-Barré syndrome recover

Some people may recover on their own. Others may need treatments for Guillain-Barré syndrome that include immunoglobulin therapy in high doses and plasma exchange, the CDC said.

Most people fully recover, though some may be left with residual paralysis, Schaffner said.

The patient may need to go through rehabilitation “to regain their strength,” but the “underlying disease is gone,” Wilson said.

The recovery process can take anywhere from a few weeks to a few years, the CDC said.

Guillain-Barré syndrome may be tough to prevent

Prevention is tough because the exact cause of the disorder is unknown, experts said.

Also, since the disorder is rare, the risk of recurrence is not well understood. “Clearly, you’d want to avoid whatever you think the stimulus was, but you can’t always define it,” Schaffner said.

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