Singer Sufjan Stevens Diagnosed With Guillain-Barré Syndrome: What To Know About This Rare Disease

Singer-songwriter Sufjan Stevens shared a shocking update in a recent Instagram post, where he revealed that he is "learning to walk again" after being diagnosed with the rare Guillain-Barre Syndrome (GBS), a neurological disorder that affects a person's ability to walk. 

"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. 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-Barre Syndrome," the 48-year-old singer shared. 

"Luckily there’s treatment for this — they administer immuno-haemoglobin infusions for five days and pray that the disease doesn’t spread to the lungs, heart and brain. 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 stabilise my condition. I owe them my life," he added. 

Currently, Sujjan is undergoing intensive physical therapy/occupational therapy and building his strength to get his body back in shape and to walk again. 

Also Read: It Started With A Fever And Led To Paralysis: Content Creator Aditya Vashisht On Battling A Rare Disorder

What Is Guillain-Barré Syndrome?

Dr Praveen Gupta, Director and Unit Head-Neurology, Fortis Memorial Research Institute, Gurugram, described Guillain-Barre Syndrome (GBS) as an infrequent nerve disorder that affects the peripheral nervous system, which is that part that lies outside your brain and spinal cord.

"It is caused by the body's immune cells attacking the nerves, leading to swelling in the nerve membrane and damage to nerve axons," he explained, adding, “The exact cause of GBS is unknown, but it often occurs after a viral or bacterial infection which activates the immune system.”

Prevalence

According to the World Health Organization (WHO), GBS can affect people of all ages, but it is more common in adults and in males.

It is extremely rare with a worldwide median annual incidence of 1.3 cases per population of 100 000, with men being more frequently affected than women, said a study published in the Journal Drugs.

"The prognosis of GBS is generally favourable, but it is a serious disease with a mortality of approximately 10% and approximately 20% of patients are left with severe disability," the research added. 

Symptoms To Watch Out For

Dr Gupta lists the common manifestations of GBS as:

• Muscle weakness or paralysis starting in the legs and ascending to  the arms and upper body
• Loss of reflexes
• Tingling or numbness in the extremities
• Difficulty walking
• Difficulty with facial movements or swallowing
• Difficulty in breathing in severe cases; in approximately one third of people, the chest muscles are affected, making it hard to breathe, as per the WHO

Furthermore, the doctor shares that the symptoms of GBS can progress rapidly over a period of days to weeks. 

Also Read: Guillain-Barre Syndrome; Symptoms, Causes, Diagnosis, Treatment, Prognosis & More

Diagnosis And Treatment

GBS can be diagnosed by a test called nerve conduction study that evaluates the type of nerve damage. Some people may require lumbar puncture or Electromyography (EMG) to "rule out GBS mimics, particularly infectious diseases," says a study published in the European Journal of Neurology. 

As far as treatment goes, immunomodulation with plasmapheresis or Intravenous Immunoglobulin (IVIG) is the primary approach for GBS, according to Dr Gupta, who adds, “IVIG is a product made up of human antibodies, which help manage various immunodeficiency states.”

In addition, supportive treatment with physiotherapy, proper nutrition, and supplements may help and those with respiratory difficulty may require ventilator and critical care management, the doctor adds. 

In conclusion, Dr Gupta reassures that most people with the condition do experience a significant recovery. “With appropriate medical care, around 80-90% of individuals with GBS make a full recovery over time. However, the recovery process can be slow, ranging from weeks to months or even years in some cases,” he says. 

“Early diagnosis, correct intervention, and proper medical care greatly improves the chances of good outcome and  quality of life,” he concludes. 

Image credit: Instagram/sufjan