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New Survey on Guillain-Barré Syndrome Aims to Improve Awareness

In a significant move towards understanding the profound effects of Guillain-Barré Syndrome (GBS), the GBS | CIDP Foundation International has released an illuminating survey that captures the lived experiences of patients. This report highlights the crucial need for public awareness regarding this life-threatening neurological disorder, coinciding with Rare Disease Day to foster global recognition and support.

The Importance of Awareness

Guillain-Barré Syndrome is a rare condition affecting thousands of Americans annually, yet its recognition remains alarmingly low. The foundation's president and CEO, Lisa Butler, articulated the urgency: "The public is largely unaware of the condition and its life-altering consequences." With this survey, the foundation aims to amplify patients' voices and draw attention to the severe physical, social, and economic repercussions of living with GBS.

Key Findings from the Survey

The survey, which engaged individuals who have experienced GBS, unveiled distressing insights:

• - Acute Care: It was revealed that approximately one-third of GBS patients require assistance from a ventilator, while nearly two-thirds find themselves admitted to intensive care units.
• - Recovery Challenges: Recovery is often long and arduous; around two-thirds of patients will need rehabilitation services. Alarmingly, 90% report significant fatigue that hampers daily activities, and three-quarters express that pain significantly disrupts their ability to function normally. Moreover, 45% still rely on mobility aids such as wheelchairs or walkers even after treatment.

In addition to physical hardships, the survey shed light on the financial and psychological burdens:

• - Financial Strain: A troubling 40% of patients noted changes in their employment status due to their condition. Almost 20% incur annual out-of-pocket costs exceeding $5,000, further complicating their economic stability.
• - Mental Health Effects: The emotional toll is equally significant, with 60% of respondents expressing feelings of helplessness attributable to their GBS experience.

The Urgency for Effective Treatments

Dr. Jeffrey Allen, an eminent neurologist and member of the Global Medical Advisory Board for the foundation, emphasized the pressing need for effective treatments, stating, "This new patient survey data makes clear, GBS can result in monthslong hospital stays -- with no indication of when recovery will come." His insights reflect the urgent necessity for further research and development in the treatment of GBS.

Inspiring Change and Research

The foundation hopes that the revealing results of this survey will not only enhance understanding among healthcare providers and caregivers but also inspire innovative research initiatives. The goal is to address the pressing challenges faced by GBS patients while improving their quality of life.

For those interested in exploring the comprehensive report, it is accessible through the GBS | CIDP Foundation International's official channels. Additionally, recordings of the recent State of the Science meetings featuring leading experts discussing the latest research endeavors in GBS are available for viewing.

By bringing these issues to the forefront, the GBS | CIDP Foundation International is paving the way for increased awareness and advocacy surrounding Guillain-Barré Syndrome. This initiative is a powerful reminder of the critical importance of patient experiences in shaping the future of medical research and support services for rare diseases.