The MIT Braintrust Center for Neurological Disorder Information

Guillain-Barre syndrome

Guillain-Barre syndrome (GBS) is a neuro-immunological disorder involving the body's immune system attack of the peripheral nervous system.  This disease causes severe debilitation, usually involving extreme weakness, and some degree of temporary paralysis.  Approximately 1 or 2 out of every 100,000 people are afflicted with this disorder.  Alternate names of GBS include Landry-Guillain-Barre syndrome, acute idiopathic polyneuritis, infectious polyneuritis, and acute inflammatory polyneuropathy.

 Part 1: General Information
 Part 2: Self-Help
 Part 3: Further Information

I. General Information

GBS is believed to be caused by the attack of the myelin sheath of nerves by antibodies or white blood cells.  This causes the nerves to enflame, slowing communication to and from the brain.  Eventually, the brain will not be able to effectively communicate with the peripheral nerves, causing a state of paralysis.  The paralysis may lead to complications like pneumonia, abnormal heart-beat and other life-threatening problems.  Cases of GBS are somewhat more common following gastrointestinal or respiratory viral infections.
GBS afflicts its victims in several degrees.  At first, victims notice and odd tingling sensation at their extremities.  These symptoms can include (but are not limited to) "crawling skin," insensitivity to hot or cold, difficulty in distinguishing textures, blurred vision, difficulty moving face muscles, dizziness, palpitations (sensation of feeling heartbeat), difficulty beginning to urinate, incomplete bladder emptying, incontinence (leaking of urine), constipation, and muscle contractions.  These early symptoms are often accompanied by sudden weakness, frequently accelerating in the first 24-72 hours.  Victims become severely out of breath and unable to perform previously effortless tasks, such as swallowing.  Cramps and body aches often follow.  After approximately two weeks, the patient may deteriorate to a condition of severe paralysis.  Potential life-threatening by-products of this disease include respiratory failure, aspiration of food/fluids into the lungs, pneumonia, increased risk of infections, deep vein thrombosis, permanent loss of movement of an area, contractures of joints or other deformities.
There is no known prevention for this disorder.  However, there are two major types of therapies to help treat this disease. Plasmaphoresis is a treatment where blood is removed from the body.  The red and white blood cells are then separated from the plasma, and the cells are returned to the body.  Though physicians and researchers are not exactly sure why this works, it is believed that the plasma contains the antibodies that are attacking the nerves' myelin sheaths, so this therapy minimizes further nerve damage.  A second promising therapy involves large doses of properly functioning immunoglobulins.  Research is being done to determine how and why this method is effective at lessening the immune attack on the nervous system.  Doctors are challenged by the task of keeping the body functioning normally during the procedure, which requires constant monitoring under intensive care.
 

II. Self-help


Both the victims and their families often greatly benefit from support groups.  Several organizations have established internet based discussion groups.  These organizations include:

The Guillain-Barre Syndrome Foundation International.
P.O. Box 262, Wynnewood, PA 19096.  Tel: (610) 667-0131  http://www.webmast.com/gbs/index.html.
The website offers opportunities for live chat, a newsletter and discussion boards.

Another prominent support group is the internet group
http://www.gbs.org.
This organization offers an email mailing list that can be joined at http://www.gbs.org/mail/lists/etal.

Guillain-Barre Syndrome Support Group of the United Kingdom, Lincolnshire County Council, Council Offices, Eastgate, Sleaford, Lincolnshire NG34 7EB, England.  Tel/Fax: 01529 304615
http://glaxocentre.merseyside.org/gbg.html.

Inflammatory Neuropathy Support Group of Victoria Inc.  IN Group.  http://home.vicnet.net.au/~ingroup/
Contact:  James Gerrand 138b Princess St. Kew, Victoria 3101, Australia.  Tel: +61-3-9853-6443  Fax: +61-3-9853-4150  Modem: +61-3-9853-4990  E-mail: ingroup@vicnet.net.au

There is also a Guillain-Barre Syndrome Forum located at
http://neuro-www.mgh.harvard.edu/forum/GuillainBarreSyndromeMenu.html
set up by Massachusetts General Hospital.
 

III. Further Information

Besides these support groups and their associated webpages, there are several other resources that one can use to educate oneself about GBS.  These sources include:

National Organization for Rare Disorders, Inc.  100 Rte 37, P.O. Box 8923, New Fairfield, CT, 06812-8923.  Tel:  (203) 746-6518, (203) 746-6927 (TDD for hearing impaired).

Jeff Steinhilber, a former GBS patient, set up a webpage at http://neuro-www.mgh.harvard.edu/forum/GuillainBarreSyndromeMenu.html
that contains several other online resources.

Guillain-Barre Syndrome Association of New South Wales.  P.O. Box 572, Epping, NSW 1710, Australia. Tel: 011 61 2 9773 3048.
http://www.ozemail.com.au/~guillain/
email address: guillain@ozemail.com.au.
This website also includes a list of books on or related to GBS, including _Bed Number Ten_ by Sue Baier and Mary Schomaker, _No Laughing Matter_ by Joseph Heller, _Masks_ by Gloria Hatrick, and three books entitled _Guillain-Barre Syndrome_ written separately by Allan Ropper, Richard Hughes, and Gareth Parry.  The last three books are slightly more geared towards physicians, whereas the others are generally tailored towards a more general audience.

 MIT Braintrust Center for Neurological Disorder Information