CONSHOHOCKEN, PA — The GBS | CIDP Foundation International has unveiled survey data that paints a sobering picture of the physical, social, and financial challenges faced by individuals with Guillain-Barré Syndrome (GBS). The report aims to elevate awareness of this rare and often life-altering neurological condition and spur further research into effective treatments.
“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 Foundation.
GBS is a rare disorder in which the body’s immune system attacks the peripheral nervous system, leading to symptoms like muscle weakness, numbness, and in severe cases, paralysis. The report reveals key insights from patients regarding their experiences before, during, and after diagnosis, underscoring the devastating impact of the condition.
Key Survey Findings
- Acute Care: One in three patients requires mechanical ventilation during treatment, and nearly two-thirds of them need intensive care.
- Recovery: Two-thirds undergo lengthy rehabilitation, with 90% struggling to complete daily tasks due to fatigue. Around 75% report chronic pain interfering with daily life, and 45% require medical devices such as wheelchairs.
- Financial and Emotional Costs: Nearly 40% of patients encounter changes in employment, while one in five faces annual out-of-pocket medical costs exceeding $5,000. Furthermore, six in ten report feelings of helplessness.
“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 Foundation’s Global Medical Advisory Board.
The data was released alongside the Foundation’s “State of the Science” meeting, which brought together leading GBS researchers to discuss the latest advancements in understanding and treating the disorder. The Foundation hopes the newly highlighted patient challenges will serve as a call to action for the medical community and broader public to explore solutions and support those affected by the condition.
“Our survey identifies GBS patients’ most pressing needs and challenges,” said Butler. “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.”
By releasing this report aims to amplify the voices of GBS patients while advocating for future advancements in care and treatment.
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