May is GBS and CIDP Awareness Month: Spreading Rare Disease Awareness

The month of May is recognized as Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP) awareness month, a time set aside to spread awareness about these rare conditions among the medical community and the general public. The GBS/CIDP International Foundation has so many ways for people to get involved this year with its Share The Aware campaign happening now.

About Guillain-Barré Syndrome (GBS)

Guillain-Barré syndrome is an autoimmune disease which is characterized by rapid onset muscle weakness. This is caused by the immune system inflicting damage on the peripheral nervous system. The symptoms can appear in a little as a few hours or over the course of a few weeks. The trigger that causes the autoimmune response is linked to an infection of the digestive tract or respiratory tract in most cases. The infections are often linked to Campylobacter jejuni or cytomegalovirus. Other infections can also serve as potential triggers. Symptoms of Guillain-Barré syndrome include sensations like numbness, pain, or tingling, progressive muscle weakness of the arms, legs, and face, pain, and difficulty swallowing. Some patients may experience respiratory failure, which is a medical emergency. Treatment includes interventions to restore breathing ability, immunotherapy, and rehabilitation to restore movement and muscle strength. To learn more about Guillain-Barré syndrome, click here.

About Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a disorder which is most characterized by inflammation of the peripheral nervous system. It is closely related to Guillain-Barré syndrome, and in effect is a long-term, chronic form of that disease. Chronic inflammatory demyelinating polyneuropathy is an autoimmune disorder in which the immune system attacks healthy body tissue by mistake. Symptoms of the disorder include difficulty walking, tingling or numbness, nerve pain, muscle weakness, muscle cramps, loss of reflexes, and poor balance. Treatment for the disease often includes corticosteroids, intravenous immunoglobulin, plasmapheresis, or other drugs that can suppress the immune system. Physical therapy can produce improved muscle strength; when immune system suppressants are not effective, stem cell transplant may be considered. The disease tends to relapse and remit sporadically. To learn more about chronic inflammatory demyelinating polyneuropathy, click here.

Spreading Awareness

Ready to get involved? You can support awareness by:

  • Purchasing a copy of GBS survivor Barry Shore’s book The Joy of Living: How to Slay Stress and Be Happy means that $1 dollar will be donated to the foundation from May 11-19.
  • Register for the Virtual Regional Conference on May 15.
  • Get involved in the Youth, Teen, and Young Adults (YTA) program. Click here to learn more.
  • Sign up for Zoom Coffee Chats hosted by the foundation each month.

Don’t forget to use the #ShareTheAware and #GBSCIDPsharetheAWARE hashtags on social media. There are so many other ways to spread awareness about GBS and CIDP education, research, and advocacy. Click here to see all of the resources available for GBS/CIDP Awareness Month.

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