Some aging polio survivors experience new problems BY DEBORAH L. SHELTON Of the Post-Dispatch Wednesday, Jun. 01 2005 To most people, polio is a disease of the past. But millions of people around the world, including some in the St. Louis area, live every day with the aftereffects of the devastating disease. A conference that begins here today aims to help those survivors live as healthily and independently as possible. About 300 polio survivors, medical researchers and health professionals from around the world are expected at the three-day event. Poliomyelitis hit its peak in the United States in 1952, and the last case of naturally occurring infection was reported in 1979. But up to 20 million people - about one million in the United States - have survived polio. Most of the U.S. survivors were infected before the development of the first polio vaccine in 1955. Most people who contracted the polio virus never developed symptoms. But others who were disabled by the disease struggle to live normal lives, said conference coordinator Joan Headley, executive director of Post-Polio Health International, which is based in St. Louis. "Even more critical is that there are still new cases of polio discovered in places around the world, and we need to remain vigilant to not only eliminate this disease but also to continually find new treatments to minimize its long-term effects," Headley said. She contracted polio in 1948 when she was about 15 months old. People usually associate polio with the iron lung, a cylindrical steel drum that encloses the entire body, leaving only the head exposed. The massive machine serves as an artificial lung. But the majority of polio survivors didn't experience severe breathing problems. Survivors of polio epidemics in the U.S. range in age from the mid-50s to the 90s. A small number contracted polio from vaccine before the government mandated exclusive use of the shot, which is made of dead virus and can't cause infections. Post-polio syndrome A younger survivor, Mirsada Karadzic, 40, of St. Louis, contracted polio in 1970 at age 5 in her native Bosnia. "You haven't had polio in this country for 50 years, so people think there are no polio survivors alive," said Karadzic, who is paralyzed and uses a wheelchair. "But we're here. We're still here." The polio virus damages motor nerve cells, leaving the muscles they control temporarily or permanently paralyzed. Headley said 25 percent to 40 percent of polio survivors develop "late effects" of the disease. As they age, these survivors develop additional problems, such as new muscle weakness; muscle or joint pain; unexplained fatigue; or difficulties with sleeping, breathing or swallowing. The late effects generally occur 15 to 30 years after the initial infection. Doris Jones, of Dellwood, contracted polio in 1946 when she was 8. She was paralyzed throughout her body and uses a wheelchair. In recent years, Jones, 67, has been experiencing muscle spasms, partly due to the severe curvature of her spine. The condition, called scoliosis, has worsened over the years and affected her breathing muscles. Since 1999, she has used an assistive breathing device while she sleeps. Dr. Oscar A. Schwartz said aging appears to be accelerated in some polio patients. But it can be difficult for medical specialists to distinguish between normal aging and polio-related symptoms, such as fatigue, said Schwartz, a lung specialist and medical director of the sleep disorders clinic at Barnes-Jewish Hospital-West County. It's not unusual for polio survivors to report symptoms similar to ones experienced when they were first infected, Schwartz said. Some used crutches, braces or a cane early on but later were able to do without them. As they grew older, however, they required a wheelchair, or like Jones, a breathing device while sleeping. Some nerves regenerate but appear to age faster, said Dr. Martin B. Wice, medical director of rehabilitation medicine at St. John's Mercy Medical Center and director of the hospital's post-polio program. The nerve damage can affect the muscles that control the arms and legs, breathing and swallowing. The new muscle wasting is believed to be a consequence of the original infection, not a new one, Wice said. Some muscles might be injured by overuse because they are compensating for muscles damaged by the virus. The term post-polio syndrome has been coined to describe many of the symptoms, which can't be explained by other causes. But the definition is not widely agreed upon, he said. There's no cure for post-polio syndrome, Wice said, and it's not clear why some people develop it and others don't. But "with proper medical management and evaluation, polio survivors can still function well for many more years to come," he said. Polio Poliomyelitis was first identified by Michael Underwood in 1789. The first outbreak in the United States occurred in 1843. 21,000 paralytic cases were reported in the U.S. in 1952, when polio reached its peak here. The first polio vaccine, developed by Dr. Jonas Salk, was introduced in 1955. The last case of "wild virus" polio occurred in the U.S. in 1979. "Wild virus" refers to naturally occurring polio. The Western Hemisphere has been polio-free since 1994. In 2000, a federal immunization advisory group urged discontinuation of oral vaccine, first produced in the 1960s, to eliminate cases of vaccine-associated polio. - Source: Centers for Disease Control and Prevention Living with polio What: Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living: "Strategies for Living Well" Who: Polio survivors, users of ventilators, family members, health professionals, medical researchers and others When: Today through Saturday Where: St. Louis Marriott Downtown There is a fee for attending. Information is available at the conference, or at www.post-polio.org.