Guillain-Barre syndrome

Información en español Title

Other Names:

Acute autoimmune peripheral neuropathy; GBS; Acute immune-mediated polyneuropathy; Acute autoimmune peripheral neuropathy; GBS; Acute immune-mediated polyneuropathy; Acute inflammatory demyelinating polyneuropathy; Acute inflammatory demyelinating polyradiculoneuropathy; Acute inflammatory neuropathy; Acute inflammatory polyneuropathy; Landry-Guillain-Barre-Strohl syndrome; Landry's ascending paralysis; Post-infective polyneuritis; Guillain-Barré syndrome; Guillain-Barré-Strohl syndrome See More

Categories:

Nervous System Diseases

Summary Summary

Guillain-Barré syndrome (GBS) is a rare disorder in which the body's immune system attacks part of the peripheral nervous system. Symptoms include muscle weakness, numbness, and tingling sensations, which can increase in intensity until the muscles cannot be used at all. Usually GBS occurs a few days or weeks after symptoms of a viral infection.^[1] It remains unclear why only some people develop GBS but there may be a genetic predisposition in some cases.^[2] Diagnosed patients should be admitted to a hospital for early treatment. There is no cure for GBS, but treatments such as plasma exchange (plasmapheresis) and high dose immunoglobulins may reduce how severe the symptoms are and how long the symptoms last. Recovery can take as little as a few days to as long as a few years. About 30% of those with GBS have permanent weakness. A small number may suffer a relapse many years after the initial attack.^[1]^[3]

Last updated: 5/12/2017

Symptoms Symptoms

The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.

Signs and Symptoms	Approximate number of patients (when available)
Acute demyelinating polyneuropathy	-

Last updated: 9/1/2017

Cause Cause

Many things can cause GBS, and anyone can develop GBS, especially people older than 50 years of age. GBS is considered to be a disease involving of the immune system that targets the nerves outside the brain and spinal cord (peripheral nerves). About two-thirds of people who develop GBS symptoms do so several days or weeks after they have been sick with diarrhea or a respiratory illness, caused by a viral (such as cytomegalovirus, Epstein Barr virus, flu virus, varicella zoster virus, human immunodeficiency virus, herpes simplex virus) or bacterial (such as Campylobacter jejuni or Mycoplasma pneumoniae) infection. The most frequent infections associated with GBS are the infections with Campylobacter jejuni and with cytomegalovirus.^[3]^[4]

On very rare occasions, people have developed GBS within a few days or weeks after getting vaccinated. In 1976, there were several cases in which people developed GBS after getting the swine flu vaccine. The Institute of Medicine (IOM) reviewed this issue in 2003 and concluded that people who received the 1976 swine flu vaccine had an increased risk for developing GBS. The link between GBS and the flu vaccine in other years is unclear. It is believed that if there is any risk of developing GBS after seasonal flu vaccines, it is very small, about one in a million. Studies suggest it is more likely that a person is more likely to develop GBS after having the flu than after getting a vaccine. It is important to keep in mind that severe illness and death are associated with the flu, and the flu vaccine is one of the best ways to prevent the flu and the complications associated with the flu.^[4]

The Center for Disease Control and Prevention (CDC) in United States has a system that monitors vaccine safety and is called the Vaccine Adverse Event Reporting System (VAERS).

There are also case reports that suggest a link between GBS and certain medications and surgical procedures. However, whether there is indeed a link and what is the link is currently unclear.^[3]

Last updated: 5/15/2017

Prognosis Prognosis

The long-term outlook for people with GBS varies considerably. About 80% of people with GBS walk independently 6 months after the diagnosis, and about 84% walk independently one year after the diagnosis. About 60% of people with GBS have full motor strength recovery at one year, but severe motor problems continue in about 14%. Five to ten percent have a prolonged course, with several months of ventilator dependency and very delayed and incomplete recovery.^[5]

Within a year of diagnosis, death occurs in about 4 to 5 percent of affected people, despite intensive care. Causes of death include acute respiratory distress syndrome, sepsis, pulmonary emboli, and unexplained cardiac arrest.^[5]

In about 10% of people with GBS, an acute relapse occurs after initial improvement or stabilization after treatment. The risk of relapse appears to be higher in those who have had a later onset of treatment, a longer-lasting disease course, and more associated medical conditions. Recurrence of GBS is rare but has been reported in 2-5% of affected people.^[3] About 2 percent go on to develop chronic inflammatory demyelinating polyradiculoneuropathy (CIDP).^[5]

Last updated: 5/12/2017

Do you have updated information on this condition? Let us know.

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are studying or have studied Guillain-Barre syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

GBS/CIDP Foundation International
The Holly Building
104 1/2 Forrest Avenue
Narberth, PA 19072
Toll-free: 866-224-3301
Telephone: 610-667-0131
Fax: 610-667-7036
E-mail: info@gbs-cidp.org
Website: http://www.gbs-cidp.org
Guillain Barré Syndrome Support Group NZ Trust
113 Weka Road
Mariri RD2
Upper Moutere
Nelson 7175
New Zealand
Telephone: (03) 526 6076
E-mail: tonypearson@xtra.co.nz
Website: http://www.gbsnz.org.nz/

Organizations Providing General Support

American Autoimmune Related Diseases Association (AARDA)
22100 Gratiot Avenue
Eastpointe, MI 48021
Toll-free: 800-598-4668
Telephone: 586-776-3900
Fax: 586-776-3903
E-mail: aarda@aarda.org
Website: https://www.aarda.org/

Do you know of an organization? Send us your suggestions.

Living With Living With

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Genetics Resources

To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by GeneTests, the American College of Medical Genetics, and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.

Community Resources

The Job Accommodation Network (JAN) has information on workplace accommodations and disability employment issues related to this condition. JAN is a service of the Office of Disability Employment Policy in the U.S. Department of Labor.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

You can obtain information on this topic from the Centers for Disease Control and Prevention (CDC). The CDC is recognized as the lead federal agency for developing and applying disease prevention and control, environmental health, and health promotion and education activities designed to improve the health of the people of the United States.
Genetics Home Reference (GHR) contains information on Guillain-Barre syndrome. This website is maintained by the National Library of Medicine.
MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The Merck Manuals Online Medical Library provides information on this condition for patients and caregivers.
The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
PubMed is a searchable database of medical literature and lists journal articles that discuss Guillain-Barre syndrome. Click on the link to view a sample search on this topic.

News & Events News & Events

News

Don’t Miss the NCATS Toolkit for Patient-Focused Therapy Development Event
August 31, 2017
Funding Opportunities Now Available for the Undiagnosed Diseases Network (UDN) Phase II
August 30, 2017
IRDiRC Goals 2017-2027: New Rare Disease Research Goals for the Next Decade
August 10, 2017

NCATS Co-Sponsored Conferences

Autoinflammation 2013: The Seventh International Congress of FMF and Autoinflammatory Diseases Wednesday, May 22, 2013 - Sunday, May 26, 2013
Location: Lausanne, Switzerland
Description: The goals of this meeting include the exchange of clinical and scientific information regarding the autoinflammatory diseases. This is likely to result in improvements in the diagnosis and treatment of these diseases. Past Congresses have resulted in new scientific collaborations, development of registries for patients with specific autoinflammatory disorders, and the initiation of multicenter clinical trials.

Contact: Daniel Kastner, M.D., Ph.D., 301-496-8364kastnerd@nih.gov

Co-funding Institute(s): National Human Genome Research Institute, Office of Rare Diseases Research

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

I had Guillain-Barré in 2006 and initially recovered well in the first 4 years. Then the muscle weakness and pain suddenly got worse again over the following years to the point of me being practically housebound now. Doctors have no idea why this is happening. Is there any explanation? See answer
I have just recovered from Guillian-Barre syndrome. I want to know if it will affect me again? See answer
My mother was diagnosed with Guillain-Barre syndrome after having a flu shot in 2001. Does this make me more at risk of developing Guillain-Barre syndrome if I have a flu shot? See answer

Have a question? Contact a GARD Information Specialist.

References References

Guillain-Barré Syndrome Fact Sheet. National Institute of Neurological Disorders and Stroke Web site. April 29, 2015; http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm.
Guillain-Barre syndrome, familial. OMIM database. April 8, 2009; http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=139393.
Andary M & cols. Guillain-Barre Syndrome. Medscape Reference. 2017; http://emedicine.medscape.com/article/315632-overview#aw2aab6b2b5.
Zika and Guillain-Barre Syndrome. Centers for Disease Control and Prevention (CDC). March 10, 2016; http://www.cdc.gov/zika/qa/gbs-qa.html.
Vriesendorp FJ. Treatment and prognosis of Guillain-Barré syndrome in adults. UpToDate. Waltham, MA: UpToDate; 2017;