The MIT Braintrust Center for Neurological Disorder Information
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
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.
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
The website offers opportunities for live chat, a newsletter and discussion
Another prominent support group is the internet group
This organization offers an email mailing list that can be joined at
Guillain-Barre Syndrome Support Group of the United Kingdom, Lincolnshire
County Council, Council Offices, Eastgate, Sleaford, Lincolnshire NG34
7EB, England. Tel/Fax: 01529 304615
Inflammatory Neuropathy Support Group of Victoria Inc. IN Group.
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: email@example.com
There is also a Guillain-Barre Syndrome Forum located at
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
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.
email address: firstname.lastname@example.org.
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