New Survey Offers Detailed View of Short- and Long-Term Burden of Guillain-Barré Syndrome

CONSHOHOCKEN, Pa., Feb. 28, 2025 /PRNewswire/ -- The GBS | CIDP Foundation International today released new survey data illustrating how people with Guillain-Barré Syndrome experience this life-threatening neurological condition.

The report's release coincides with Rare Disease Day, a global initiative to raise awareness and generate support for everyone with a rare disease, as well as the latest edition of the Foundation's "State of the Science" meeting, when the world's leading GBS experts gather to discuss the latest research into the condition.

"Thousands of Americans develop Guillain-Barré each year. Yet the public is largely unaware of the condition and its life-altering consequences," said Lisa Butler, president and CEO of the GBS | CIDP Foundation International. "We hope our new survey will help elevate patients' experiences and raise awareness of the often-devastating physical, social, and economic effects of GBS."

The report surveys people who have had or are recovering from GBS -- a neurological disorder that causes numbness, weakness, and often paralysis of the limbs, face, and muscles used to breathe -- about their experiences before, during, and after diagnosis.

Key findings from the survey include:

• Acute care
  • One in three GBS patients needs to be placed on a ventilator.
  • Nearly two-thirds of GBS patients end up in the intensive care unit.
• Recovery
  • Two in three GBS patients will need to undergo rehab.
  • Almost 90% struggle to finish tasks due to fatigue.
  • Roughly three-quarters say pain interferes with their day-to-day activities.
  • Forty-five percent require medical devices, like wheelchairs or walkers, after treatment.
• Financial, social, and mental health effects
  • Four in ten GBS patients experience changes in their employment.
  • Nearly one-fifth face annual out-of-pocket costs of over $5,000.
  • Six in ten report feeling "helpless" as a result of their GBS.

"As this new patient survey data makes clear, GBS can result in monthslong hospital stays -- with no indication of when recovery will come," said Dr. Jeffrey Allen, professor of neurology at the University of Minnesota Medical School and head of the GBS | CIDP Foundation International's Global Medical Advisory Board. "Our new report mapping the patient journey from the onset of symptoms through diagnosis, treatment, and recovery shows just how desperately the world needs effective new treatments for GBS."

"Our survey identifies GBS patients' most pressing needs and challenges," Butler said. "We hope this data can help physicians, caregivers, and the public gain a deeper understanding of the GBS experience -- and inspire additional research into this often-terrifying condition."

The full GBS Patient Registry Report is available here. You can watch recordings of this year's State of the Science meetings here.

For more information, please visit www.gbs-cidp.org or contact David Edwards at (202) 771-5222 or [email protected].

About GBS | CIDP Foundation International
The GBS | CIDP Foundation International is a global nonprofit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related conditions through a commitment to support, education, research and advocacy.

SOURCE The GBS | CIDP Foundation International