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Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body's immune system attacks the nerves outside the brain and spinal cord. Weakness and tingling in your extremities are usually the first symptoms.
These sensations can quickly spread, eventually paralyzing the whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment.
The exact cause of Guillain-Barre syndrome is unknown.
- No one’s sure if a germ or virus, like the Zika virus, causes GBS. It could be that some illnesses alter your nerve cells, so your immune system starts to view them as threats. Others think your immune system forgets which cells it shouldn’t attack.
- It is often preceded a few days or weeks by an infectious illness such as a respiratory infection or the stomach flu.
- It is not contagious or inherited.
- The affected person's immune system begins to attack the body itself. It is thought that, at least in some cases, this immune attack is initiated to fight an infection and that some chemicals on infecting bacteria and viruses resemble those on nerve cells, which, in turn, also become targets of attack. Since the body’s own immune system does the damage, GBS is called an autoimmune disease (“auto” meaning “self”). Normally the immune system uses antibodies (molecules produced in an immune response) and special white blood cells to protect us by attacking infecting microorganisms (bacteria and viruses). In Guillain-Barré syndrome, however, the immune system mistakenly attacks the healthy nerves.
- Occasionally surgery will trigger the syndrome. In rare cases vaccinations may increase the risk of GBS. Recently, some countries worldwide reported an increased incidence of GBS following infection with the Zika virus.
There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects from it, such as weakness, numbness or fatigue.
Symptoms
Guillain-Barre syndrome often begins with tingling and weakness starting in the feet and legs and spreading to the upper body and arms. In about half of people with the disorder, symptoms begin in the arms or face. As Guillain-Barre syndrome progresses, muscle weakness can evolve into paralysis.
Signs and symptoms of Guillain-Barre syndrome may include:
- Prickling, pins and needles sensations in your fingers, toes, ankles or wrists
- Weakness in your legs that spreads to your upper body
- Unsteady walking or inability to walk or climb stairs
- Difficulty with eye or facial movements, including speaking, chewing or swallowing
- Severe pain that may feel achy or cramp-like and may be worse at night
- Difficulty with bladder control or bowel function
- Rapid heart rate
- Low or high blood pressure
- Difficulty breathing
People with Guillain-Barre syndrome usually experience their most significant weakness within two to four weeks after symptoms begin.
Types
Once thought to be a single disorder, Guillain-Barre syndrome is now known to occur in several forms. The main types are:
- Acute inflammatory demyelinating polyradiculoneuropathy (AIDP), the most common form in the U.S. The most common sign of AIDP is muscle weakness that starts in the lower part of the body where the nerves' protective covering (myelin sheath) is damaged and spreads upward. The damage prevents nerves from transmitting signals to your brain, causing weakness, numbness or paralysis.
- Miller Fisher syndrome (MFS), in which paralysis starts in the eyes. MFS is also associated with unsteady gait. MFS occurs in about 5 percent of people with Guillain-Barre syndrome in the U.S. but is more common in Asia.
- Acute motor axonal neuropathy (AMAN) and acute motor-sensory axonal neuropathy (AMSAN) are less common in the U.S. But AMAN and AMSAN are more frequent in China, Japan and Mexico.
Complications
Guillain-Barre syndrome affects your nerves. Because nerves control your movements and body functions, people with Guillain-Barre may experience:
- Breathing difficulties. The weakness or paralysis can spread to the muscles that control your breathing, a potentially fatal complication. Up to 30 percent of people with Guillain-Barre syndrome need temporary help from a machine to breathe when they're hospitalized for treatment.
- Residual numbness or other sensations. Most people with Guillain-Barre syndrome recover completely or have only minor, residual weakness, numbness or tingling.
- Heart and blood pressure problems. Blood pressure fluctuations and irregular heart rhythms (cardiac arrhythmias) are common side effects of Guillain-Barre syndrome.
- Pain. Up to half of people with Guillain-Barre syndrome experience severe nerve pain, which may be eased with medication.
- Bowel and bladder function problems. Sluggish bowel function and urine retention may result from Guillain-Barre syndrome.
- Blood clots. People who are immobile due to Guillain-Barre syndrome are at risk of developing blood clots. Until you're able to walk independently, taking blood thinners and wearing support stockings may be recommended.
- Pressure sores. Being immobile also puts you at risk of developing bedsores (pressure sores). Frequent repositioning may help avoid this problem.
- Relapse. Around 3 percent of people with Guillain-Barre syndrome experience a relapse.
Prognosis:
Severe, early symptoms of Guillain-Barre syndrome significantly increase the risk of serious long-term complications. Rarely, death may occur from complications such as respiratory distress syndrome and heart attack.
- Guillain–Barré syndrome can lead to death as a result of a number of complications: severe infections, blood clots, and cardiac arrest likely due to autonomic neuropathy. Despite optimum care, this occurs in about 5% of cases.
- There is a variation in the rate and extent of recovery. The prognosis of Guillain–Barré syndrome is determined mainly by age (those over 40 may have a poorer outcome), and by the severity of symptoms after two weeks. Furthermore, those who experienced diarrhea before the onset of disease have a worse prognosis.
- In Western countries, the number of new episodes per year has been estimated to be between 0.89 and 1.89 cases per 100,000 people.
- Children and young adults are less likely to be affected than the elderly: the risk increases by 20% for every decade of life.
- Men are more likely to develop Guillain–Barré syndrome than women; the relative risk for men is 1.78 compared to women.
What is the long-term outlook for those with Guillain-Barré syndrome?
Guillain-Barré syndrome can affect anyone. It can strike at any age (although it is more frequent in adults and older people, 50+) and both sexes are equally prone to the disorder. GBS is estimated to affect about one person in 100,000 each year.
Guillain-Barré syndrome can be a devastating disorder because of its sudden and rapid, unexpected onset of weakness—and usually actual paralysis. Fortunately, 70-85% of people with GBS eventually experience full recovery within 6-12 months.
The life expectancy of someone who has recovered from GBS is generally the same as anyone else. There is a very small chance of having a re-occurrence of GBS. It is very important to receive the correct medical care and immunoglobin therapy in the early stage of the illness as this can influence the speed and extent of of recovery. Complications that can endanger the life of a person with GBS are generally controlled while in the ICU, and these include difficulty breathing and high blood pressure.
Typically, the point of greatest weakness occurs days to at most 4 weeks after the first symptoms occur. Symptoms then stabilize at this level for a period of days, weeks, or, sometimes months. Recovery, however, can be slow or incomplete. The recovery period may be as little as a few weeks up to a few years. Some individuals still report ongoing improvement after 2 years. About 30 percent of those with Guillain-Barré have residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack. About 15 percent of individuals experience long-term weakness; some may require ongoing use of a walker, wheelchair, or ankle support. Muscle strength may not return uniformly.
Ongoing fatigue, pain, and other annoying sensations can sometimes be troublesome. Fatigue is best handled by pacing activities and providing time for rest when fatigue sets in. Those with Guillain-Barré syndrome face not only physical difficulties, but emotionally painful periods as well. It is often extremely difficult for individuals to adjust to sudden paralysis and dependence on others for help with routine daily activities. Individuals sometimes need psychological counseling to help them adapt. Support groups can often ease emotional strain and provide valuable information.
GBS usually lasts between 14 and 30 days. If your symptoms continue longer, you may be suffering from a chronic form of GBS called chronic inflammatory demyelinating polyneuropathy and will need more aggressive treatment.
Statistically speaking, one with Guillain-Barré Syndrome has about a one in twenty chance of dying from their syndrome. There are a few possibilities on how Guillain-Barré Syndrome can kill a human, and most of them involve either the nerves themselves in which Guillain-Barré Syndrome forces the body to attack, or another disease or ailment in conjunction with Guillain-Barré Syndrome.
Notables with Guillain-Barre syndrome
- Tony Benn (1925-2014) - British politician; (Wikipedia - Tony Benn)
- Jake Burton Carpenter, founder, Burton Snowboards, Miller Fisher variant. (Wikipedia - Jake Burton Carpenter)
- Rachel Chagall (aka: Rachel Levin; b. 24 November 1952), actress, contracted GBS in 1982. In 1987, she portrayed Gabriela Brimmer, a notable disabilities activist. In 1982, she contracted Guillain–Barré syndrome, recovering sufficiently to be cast in the starring role of Gaby, A True Story. (Wikipedia - Rachel Chagall)
- Alastair Clarkson, Australian football coach. (Wikipedia - Alastair Clarkson)
- Patrick Eaves, professional ice hockey player signed to the Anaheim Ducks. (Wikipedia - Patrick Eaves)
- Tom Edlefsen, American tennis player, made the fourth round of Wimbledon in 1968, a year after he developed GBS.
- Mike Egener, Canadian hockey player
- Travis Frederick, NFL all-pro center for the Dallas Cowboys
- Rowdy Gaines, American Olympic Gold Medalist in swimming.
- Samuel Goldstein, American athlete and Paralympian
- Andy Griffith, (1926-2012) - an American actor best known for The Andy Griffith Show and Matlock, developed GBS in 1983. (Wikipedia - Andy Griffith)
- Joseph Heller, author, contracted GBS in 1981. This episode in his life is recounted in the autobiographical No Laughing Matter.
- Lucia Hippolito, Brazilian political scientist, journalist, historian, columnist and commentator.
- Karlo Miracle, nephew of Irene Miracle and principal swan eater at St. John's College, Cambridge.
- Jerry Jacka (1934–2017), legendary photographer for Arizona Highways magazine.
- Luci Baines Johnson, daughter of President Lyndon Johnson and Lady Bird Johnson, was diagnosed and under treatment for GBS in April 2010. (Wikipedia - Luci Baines Johnson)
- Hugh McElhenny, former professional American football player with the San Francisco 49ers
- Franklin D. Roosevelt (FDR), The 32nd President of the United States, was stricken with a paralytic illness in 1921, at age 39. His main symptoms were fever; symmetric, ascending paralysis; facial paralysis; bowel and bladder dysfunction; numbness and hyperesthesia; and a descending pattern of recovery. He was left permanently paralyzed from the waist down. FDR was diagnosed with "infantile paralysis" (paralytic polio) at the time, but his symptoms are more consistent with Guillain–Barré syndrome, which his doctors failed to consider as a diagnostic possibility. See Franklin D. Roosevelt's paralytic illness for more information. In 2003 doctors concluded that Roosevelt's paralysis, long attributed to poliomyelitis, was actually Guillain-Barré syndrome
- Serge Payer, Canadian-born professional hockey player.
- Morten Wieghorst, Danish soccer player played for Celtic and Brondby
- Lucky Oceans, Grammy Award winning musician
- William “The Refrigerator” Perry, former professional American football player with the Chicago Bears was diagnosed with GBS in 2008.