Polio may be forgotten… but “WE’RE STILL HERE!”
Coastal Empire Polio Survivors Association, Inc. (CEPSA) is a 501(c)3 non-profit organization that has been helping polio survivors since 1997 face the unexpected and often disabling symptoms of “The Late Effects of Polio,” Post-Polio Syndrome (PPS). Symptoms develop about 30 to 40 years after the initial poliovirus attack, which include chronic fatigue, new muscle weakness, joint and muscle pain, muscle cramps and twitching, sleeping problems, breathing and swallowing difficulties and a heightened sensitivity to anesthesia, pain and hot and cold temperatures. There are approximately 1.6 million Americans still alive today, who had polio during the epidemic years of the 40's, 50's and early 60's. Some are not aware that PPS exists which puts them at risk of being misdiagnosed or prescribed medications that increase Post-Polio symptoms.
The need for our organization continues to grow, as more and more polio survivors find themselves confronting PPS and requiring specialized health care, accessible equipment, and braces, canes, crutches or walkers. CEPSA currently has over 100 members living in Georgia and South Carolina who are experiencing PPS. Our main objective is to locate polio survivors to offer assistance, encouragement, support and Post-Polio Syndrome information. We network through our monthly meetings and newsletter by sharing vital PPS information and focusing on a wide variety of health issues that polio survivors are facing. Some of our speakers include physicians, occupational and physical therapists, nutritionists, orthotists and experts on Medicare, Social Security, emergency preparedness, Americans with Disabilities Act and independent living. We mail and e-mail over 150 monthly newsletters to polio survivors, sponsors, and interested individuals throughout the Southeast. Our goal is to promote public awareness of polio, Post-Polio Syndrome, global polio eradication, immunizations, local accessibility issues, and to let the world know “WE’RE STILL HERE!”