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Indie rock singer Sufjan Stevens announced Wednesday that he is recovering from Guillain-Barré syndrome, a rare autoimmune disease 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 nerves and can cause paralysis. He said his brother took him to a hospital after he developed symptoms that left him unable to move.
“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, feeling or mobility,” he wrote.
He said he went through several tests — MRIs, scans, X-rays, lumbar punctures and more — before he was diagnosed with the autoimmune disease. He received treatment – five days of immune hemoglobin infusions – and found he would recover.
“Very scary, but it worked,” he wrote.
Stevens said he is doing “intensive physical therapy/occupational therapy, strength building” to get his body back in shape so he can walk again.
Recovery could take time and “hard work,” he said.
“I’m 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 healthy,” he wrote.
Representatives for Stevens declined to comment when asked if the singer had suffered from another illness before the diagnosis. According to the Centers for Disease Control and Prevention, about two out of three people with Guillain-Barré syndrome had diarrhea or a respiratory illness several weeks before symptoms of the disease appeared.
Due to his health, Stevens has been 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 for Best Original Song at the 2018 Academy Awards for the tune “Mystery of Love” for the film “Call Me by Your Name.” Previously, his song “Chicago” from his 2005 album “Illinois” appeared in the film “Little Miss Sunshine” starring Steve Carrell. It was also the opening theme song of the 2019 Netflix series “The Politician” and was used in an episode of the FX show “The Bear.”
The indie rock star isn’t the only major star musician to suffer from worrying medical issues. Madonna was hospitalized in June with a serious bacterial infection, causing her to have to postpone her upcoming tour. Bruce Springsteen also postponed his September performances as he began treatment for stomach ulcers.
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.
According to the CDC, anyone can get the syndrome, but it is more common in adults over 50. In the United States, approximately 3,000 to 6,000 people develop the disease each year.
It can be caused by a previous infection
According to the National Institute of Neurological Disorders and Stroke, the exact cause of Guillain-Barré syndrome is not known.
But it is thought to be caused by a previous 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 in an attempt to fight invading bacteria or viruses are misdirected and instead attack the nervous system, triggering inflammation of the nerves that can lead to 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 that causes diarrhea, said Michael Wilson, a neurologist at the University of California, San Francisco, who specializes 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 that begins in the feet and legs and then spreads down the body to the trunk and arms, Schaffner said. However, sometimes symptoms begin in the upper body and then spread downward.
A person may find that it is difficult to climb stairs or walk, for example.
For some people, symptoms may become progressively worse, Wilson said. “It’s a syndrome where the immune system is triggered to attack the peripheral nerves,” he said. “In severe cases, people may need to be intubated because they are so weak that they cannot breathe on their own.”
Symptoms can progress over hours, days or weeks, the CDC says.
The condition should be diagnosed quickly because “people can experience a slight tingling sensation in their legs until they are paralyzed a few hours later,” Wilson said.
Some people have died from 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 high-dose immunoglobulin therapy and plasma exchange, according to the CDC.
Most people recover completely, although some may be left with residual paralysis, Schaffner said.
The patient may need to undergo rehabilitation “to regain strength,” but the “underlying condition has disappeared,” Wilson said.
The recovery process can take anywhere from a few weeks to a few years, the CDC said.
Guillain-Barré syndrome can be difficult to prevent
Prevention is difficult because the exact cause of the disease is unknown, experts said.
Because the disorder is rare, the risk of recurrence is not exactly clear. “Of course you want to avoid whatever the incentive was, but you can’t always define it,” Schaffner said.
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