We’ve reached the month of May, and you know what that means – it is Guillain-Barre syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Awareness Month! During this month, the goal is to both raise awareness of GBS and CIDP, but also to improve care for those in need. For example, shares GBS|CIDP Foundation International, many individuals with these conditions have difficulty with long-term care options. Thus, for this GBS | CIDP Awareness Month, the Foundation hopes to “be the bridge” between patients and healthcare professionals.
What are GBS and CIDP?
Guillain-Barre syndrome (GBS) is a rare condition in which the immune system mistakenly attacks the peripheral nervous system, particularly the myelin sheath (the protective covering) of peripheral nerves. Ultimately, doctors are unsure what causes this inflammatory autoimmune disorder. However, research has shown that GBS may occur following a viral infection. An estimated 1 in every 100,000 people has GBS. It is an incredibly variable disorder. Symptoms include tingling and weakness in the legs, which eventually spreads to the arms and torso; muscle pain; fatigue; high blood pressure; and a high heart rate. Recovery can take weeks to years.
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare neurological disorder which is considered to be autoimmune in nature. Altogether, CIDP causes nerve root and peripheral nerve inflammation, as well as myelin sheath destruction. This causes nerve exposure and damage. Symptoms can include abnormal or uncoordinated movements; difficulty walking; muscle weakness; pain, burning, tingling, or other abnormal sensations that typically begin in the feet; difficulty breathing; and slurred speech. Treatment is designed to stop the body from attacking the nerves.
So How Can You Raise Awareness?
Right now, you might be asking yourself how you can help to raise awareness for GBS|CIDP Awareness Month! Here are some ideas below:
- Share stories. Do you or a loved one have GBS or CIDP? If so, consider sharing your story via writing with Patient Worthy, or on social media using hashtags like #GuillainBarreSyndrome, #CIDP, or #GBSCIDPAwarenessMonth.
- Encourage healthcare professionals. The Be the Bridge program offers educational materials, webinars, and meetings for HCPs to learn more about GBS and CIDP.
- Volunteer. Want to get some hands-on advocacy experience? Consider volunteering with the GBS|CIDP Foundation International. You can also take on the Foundation’s 50 to Forward advocacy training series. Email [email protected].