Sufjan Stevens revealed he was recently diagnosed with Guillain-Barré Syndrome.
On Wednesday, the 48-year-old singer posted a selfie on Instagram sitting in a wheelchair, sharing that the rare neurological disorder has left him hospitalized and unable to walk. He apologized for his inability to attend events promoting his upcoming album, Javelin.
“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 recalled. “My brother drove me to the ER and after a series of tests — MRIs, EMGs, cat scans, X-rays, spinal taps (!), echo-cardiograms, etc. — the neurologists diagnosed me with an autoimmune disorder called Guillain-Barré Syndrome.”
Guillain-Barré Syndrome is a rare neurological disorder where the body’s immune system mistakenly attacks the nervous system, causing muscle weakness and temporary paralysis. Why people develop Guillain-Barré isn’t yet known, but most cases occur after a respiratory or gastrointestinal viral infection, according to the National Institutes of Health.
The severity of Guillain-Barré — which affects about one in 100,000 people a year — can vary from person to person, either causing a mild weakness in the body or a “devastating” paralysis.
Symptoms usually begin with a tingling in the legs or hands, and progress to weakness in both sides of the body that increases in intensity as hours or days go by. Typically, patients are given high-dose immunoglobulin therapy (IVIg).
Sufjan Stevens Instagram
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“Luckily there’s treatment for this — they administer immuno-hemoglobin infusions for five days and pray that the disease doesn’t spread to the lungs, heart and brain,” Stevens explained. “Very scary, but it worked. 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.”
“On September 8, I was transferred to acute rehab, where 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,” he continued. “It’s a slow process, but they say I will ‘recover,’ it just takes a lot of time, patience, and hard work.
Stevens admitted that he’s “hopeful” because most people with the neurological disorder learn to walk again on their own within a year. The musician added that his second week of rehab is “going really well.”
“I am working really hard to get back on my feet,” he told his followers. “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!
“I’ll keep you posted as I progress,” Stevens ended. “Thank you for your thoughts and prayers. And a huge shout out to all the incredible caretakers of the world working night and day to help us heal. They are living saints. Be well, be joyful, stay sane, stay safe. I love you. Yours truly from a wheelchair XOXOXO.”
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