What is Guillain-Barre Syndrome?

Guillain-Barré syndrome (GBS) is a rare neurological disorder in which the body’s immune system mistakenly attacks part of its peripheral nervous system—the network of nerves located outside of the brain and spinal cord. GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving the person unable to breathe independently. Fortunately, most people eventually recover from even the most severe cases of GBS.  After recovery, some people will continue to have some degree of weakness.

Guillain-Barré syndrome can affect anyone. It can strike at any age (although it is more frequent in adults and older people) and both sexes are equally prone to the disorder. GBS is estimated to affect about one person in 100,000 each year.

The exact cause of GBS is not known. Researchers don’t know why it strikes some people and not others. It is not contagious or inherited.

What they do know is that 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.

Most cases usually start a few days or weeks following a respiratory or gastrointestinal viral infection. 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.

Credit of:

What is CIDP?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.

The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. The disease is a treatable cause of acquired neuropathy and initiation of early treatment to prevent loss of nerve axons is recommended. However, some individuals are left with some residual numbness or weakness.

Tips for newly diagnosed with GBS

Holly receives many emails from concerned family members of people who have been diagnosed with GBS. Holly experienced firsthand what their family has gone through. Her family was in the exact same position at one point, begging for information on this rare disease that we had never heard of. Holly created this video to provide some suggestions that help those going through it now. We hope sharing this video will give you even a bit of strength when you need it most. If you or someone you know has recently been diagnosed with GBS, be sure to check out the video.

Tips for those Recovering From Guillain-Barre Syndrome

If you or someone you know has recently gone home from the hospital after having GBS, check out the video below that Holly created for education, support and hope. ​​​​​​​​

Holly created “Holly After GBS” social media pages to share her life after GBS, to connect with others, and to provide support/information to those who’ve been through GBS or CIDP.

“Holly After GBS” can be found on Facebook, Instagram, and YouTube.

Holly’s book is also a wealth of knowledge:

“Life Support: Surviving Guillain-Barre Syndrome - A Mother's Story of Hope and Recovery”

The GBS/CIDP Foundation improves the quality of life for individuals and families affected with GBS, CIDP & Variants. Holly is currently the Vice President on the Board of Directors and actively volunteers with the foundation, organizing awareness events and providing support to those in need. Along with her mother, she has visited many patients in the hospital, providing encouragement, advice and hope to patients and their caregivers.

In 2017, Holly was recognized for her passion to give back to the GBS/CIDP community and awarded the Walter Keast Award from the Canadian Foundation.

For more information on GBS , CIDP and their variants, to receive support or to donate to the foundation – please visit the GBS/CIDP Foundation Website.

GBS/CIDP Support Groups are an incredible way for people affected by GBS and CIDP to connect with others around the world. They are a great place to share stories, ask questions and get a variety of answers, at all times of the day. GBS/CIDP may be rare, but these support groups remind us that we are not alone. The group “Guillain-Barre' Syndrome Survivors” has over 12,000 members! For other support groups on Facebook, search Guillain-Barre, GBS, and/or CIDP in the search bar. The GBS/CIDP Foundation website also has an online chat forum and a list of upcoming support groups across various locations.