"I MERELY TOOK THE ENERGY IT TAKES TO POUT AND WROTE SOME BLUES." - DUKE ELLINGTON
Each October, Post-Polio Health International hosts the We’re still here! campaign, to raise public awareness of both the successes and the current health needs of polio survivors. In the spring of 2009, I attended the New York premiere of The Polio Crusade, a PBS documentary directed by Sara Colt for the American Experience. If you are from that generation, the story of polio is not an unfamiliar one. The film catalogs the race for a cure and the public health campaign that resulted, inspired by Franklin. D Roosevelt. Watching the footage of the beginnings of polio history was compelling, but the film also highlighted what is less known to the wider public—the story of polio survivors estimated at 750,000 in the U.S. today.
The Polio community is diverse, ranging from persons who are ventilator users, to wheelchair users, and to those with mild limb impairments. Post Polio Syndrome (PPS), diagnosed in 25-50% of persons with original poliomyelitis, was first recognized by the medical community in the 1980’s. It is a new medical condition affecting polio survivors later in life causing muscle weakness, fatigue or mobility changes. “The aim of the campaign is to invigorate the post-polio community worldwide,” says Joan Headley, Executive Director of Post Polio Health International (PHI). Grassroots Post-Polio initiatives now exist throughout the world in regions such as Canada, Europe, and Asia. Headley explains that access to adaptive devices, health care, or work-life accommodations varies widely. “Our mission is to empower people with disabilities. We seek to provide the education and tools to support our readers to be involved with life to the best of their ability,” adds Headley.
Another aim of this yearly campaign is to educate health care practitioners on the latest in PPS treatment options. For this purpose, PHI publishes quarterly newsletters for the PPS community and International
Ventilator Users network, offering readers expert multi-disciplinary advice on topics such as what’s new in assistive technology or physical therapy recommendations. PHI sponsors an “Ask Dr. Maynard” column. Dr. Maynard, a physiatrist and recognized PPS expert, answers questions on various aspects of polio care. PHI also supports research efforts; for instance, a handful of current studies examine the immune response of PPS patients. “The polio community has also been thinking about disability and aging for quite some time now,” says Headley, “This research area also applies to the broader disability
community as well.”
Speaking with Joan Headley is always an energizing experience. I remember first meeting her at a Post Polio conference sponsored by the Polio Network of New Jersey. With the assistance of a modest staff and an experienced panel of board members, Headley’s leadership has shaped PHI into the vital resource it is today. I am awed by her efforts, especially in today’s climate of struggling non-profit organizations. For 23 years and counting, her dedication to the causes of PHI has helped countless polio survivors and their families living with PPS towards health and wellness.
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