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WE ARE THE GBS/CIDP FOUNDATION INTERNATIONAL
An organization of more than 30,000 people who have recovered from
Guillain-Barre syndrome (GBS), from bouts of chronic inflammatory demyelinating
polyneuropathy (CIDP), or who have accompanied a loved one on their journey
back to health. Because we have been through the ordeal of GBS or CIDP, we
intimately understand the needs of patients and caregivers. And since we have
emerged with our health, we are reaching out to assist the recovery of others.
Contact us to find out more about the support services we offer. Our help
is always at hand.
WHAT IS GBS?
GBS is a disorder in which the body's immune system attacks the nerves. It
is rare, occurring in only one or two people per 100,000. It can develop rapidly,
beginning with weakness and abnormal sensations in the extremities and often
progressing to paralyze the body within days. In many cases, the paralysis
extends to the arms, face, and even the breathing muscles*forcing patients
to rely on a ventilator. But in most cases, CBS is temporary, with more than
85% of patients making a recovery.
WHAT IS CIDP?
CIDP is also caused by the body's immune system attacking the nerves. As with
CBS, the major symptom in CIDP is ascending weakness, but it occurs slowly*
over at least 2 months*and is often accompanied by abnormal sensations, such
as tingling and numbness. These symptoms are usually not as severe as in GBS,
but they can often recur. However, CIDP does tend to respond very well to
treatment, with around 80% of new cases showing a dramatic response to therapy.
HOW DO GBS AND CIDP DEVELOP?
CBS and CIDP damage the nerves that extend from the spinal cord and run throughout
the body, transmitting electrical signals from the brain to enable movement,
sensation, and the regulation of body functions, such as breathing and the
heartbeat. In healthy people, many of these nerves are covered by a protective
sheath, just as household electrical wires are covered by insulation. But
in CBS and CIDP, the body's immune system attacks the protective sheath* causing
damage that slows down or stops the nerves from conducting the brain's signals,
which can lead to weakness, loss of sensation, and even paralysis. Nobody
knows for sure why the immune system attacks the nerves in CIDP. But in the
case of CBS, various events may act as a trigger. Many cases occur shortly
after a viral or bacterial infection, such as the common cold, a sore throat,
or diarrhea. Cases have also developed following surgery or immunizations.
Normally, the body's immune system can recognize and attack microbes that
invade the body. Current theory on CBS, however, suggests that the body is
infected by a microbe that somehow resembles the nerves. So when the immune
system targets the intruding infection, the nerves are attacked inadvertently.
HOW ARE GBS AND CIDP DIAGNOSED?
Diagnosis of GBS and CIDP is often based on the patient's symptoms and a physical
exam. The onset of muscle weakness is usually distinctive*ascending on both
sides of the body, rather than affecting one side as in a stroke. In the case
of CBS, the progression of weakness is also rapid; whereas with CIDP, the
progression of weakness takes much longer and is generally less severe*rarely
extending to affect the breathing or facial muscles. Both conditions are associated
with loss of reflexes, such as the knee jerk, and diagnosis can be confirmed
by measuring protein levels in the spinal fluid and through the testing of
nerve and muscle function.
HOW ARE GBS AND CIDP TREATED?
For patients with CBS, treatment concentrates on supporting the patient during
paralysis, reducing the severity of the condition, and speeding recovery.
Newly diagnosed patients are usually hospitalized and placed in an intensive
care unit, where body functions can be monitored and adequate support given
during paralysis. Patients are then given treatment to help combat the condition.
One type of treatment, plasma exchange, aims to clean the blood of the antibodies
that attack the nerves. Another treatment, high-dose intravenous immunoglobulin
therapy, is thought to block the harmful antibodies. Both of these treatments
are equally effective and can dramatically speed the patient toward recovery.Patients
with CIDP tend not to need intensive care. They may also benefit from treatment
with steroids or immunosuppressive drugs that help stop the immune system
from attacking the nerves. Such treatments are not suited to every patient
because they reduce the body's ability to fight infection. But in cases where
these treatments are not an option, patients can often respond well to the
same treatments used for GBS.
SUPPORT SERVICES WE OFFER
PERSONAL VISITS
With more than 174 chapters around the world, the Foundation can arrange for
former patients to visit people currently suffering from GBS or CIDPproviding
them with valuable insights and living hope.
INFORMATIONAL BROCHURES
The Foundation publishes a wide range of literature to raise GBS and CIDP
awareness, including comprehensive advice for caregivers and patients, information
created for children, and booklets published in 18 languages.
COMMUNITY EDUCATION
Most people have never heard of GBS or CIDP, and many medical personnel are
unfamiliar with these conditions. The Foundation is working to change this
through our educational programs and the efforts of our local chapters and
support groups. We can also provide the names of physicians with experience
in the diagnosis and treatment of GBS and CIDP.
ONGOING RESEARCH
As well as working to support patients and caregivers, the Foundation funds
ongoing research into the cause and treatment of GBS and CIDP through its
grant program.
ADVOCACY
The Foundation applies advocacy to tackle important issues. We meet with federal
and state government officials, members of the medical community, and private
sector parties to promote patient support. We are also particularly active
in our support for matters relating to early diagnosis, appropriate and timely
medical treatment, and critical follow-up care.
ONLINE ASSISTANCE
Our Web site (www.gbs-cidp.org) makes it easy
for anyone, anywhere, to find out more about GBS and CIDP. You can locate
your nearest support group chapter, access educational materials, find out
more about our services, and connect with others through the discussion forum.
Our support is all around you.