Guillain-Barre Syndrome is Rare, Devastating
As news circulates about Luci Baines Johnson, youngest daughter of former president Lyndon Johnson, being treated at the Mayo Clinic for suspected Guillain-Barre syndrome, one wishes her well and also wonders, what is Guillain-Barre syndrome? What do we know about this rare disease?
This autoimmune disorder affects about 1 person in 100,000, according to the National Institute of Neurological Disorders and Stroke. Guillain-Barre syndrome, which is also known as acute inflammatory demyelinating polyneuropathy, is an inflammatory disorder of the peripheral nerves, which are the nerves that transport sensory information (e.g., temperature, pain) from the body to the brain, and motor messages from the brain to the body.
Individuals who have Guillain-Barre syndrome experience weakness and numbness or tingling in their arms and legs, and may also lose the ability to move and/or feel their legs, arms, upper body, and face, and experience severe breathing problems that can require mechanical assistance. Guillain-Barre syndrome is the most common cause of rapidly acquired paralysis in the United States, according to the GBS/CIDP Foundation International.
One of the most distressing features of the syndrome is that symptoms appear suddenly and unexpectedly. In fact, most people reach their weakest point in the course of the disease within the first two weeks after symptoms first appear, and by the third week, 90 percent of patients are at their weakest point.
Although patients can recover within a few weeks, some do not regain their strength and full sensation for several years. About 30 percent of people with Guillain-Barre still have some weakness three years after onset of the syndrome. About 3 percent of patients experience a relapse of muscle weakness and tingling sensations years after their first attack.
The good news is that the majority of patients recover from the syndrome, even those who experience the most severe symptoms, although minor weakness and loss of sensation may remain. In a small number of cases, individuals remain wheelchair-bound indefinitely. The mortality rate is 3 to 4 percent.
Guillain-Barre syndrome was in the news recently, associated with H1N1 vaccinations. Some people expressed concern that the vaccines may cause Guillain-Barre, as there was an outbreak of the syndrome back in 1974-75 among soldiers at Fort Dix, New Jersey, after they received the swine flu vaccinations.
Because progression of Guillain-Barre is unpredictable, most patients are hospitalized immediately and placed in intensive care to monitor their breathing and other body functions, according to GBS/CIDP Foundation International. Most patients need rehabilitation once they leave the hospital to help them regain use of their muscles as nerve supply returns.
The cause of Guillain-Barre is unknown. About 50 percent of cases occur after an individual has had a viral or bacterial infection. For more information about Guillain-Barre syndrome, the GBS/CIDP Foundation International is an excellent resource.
GBS/CIDP Foundation International
National Institute of Neurological Disorders and Stroke
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