The number of polio survivors has dwindled to nearly nothing now that the destructive disease is all but eradicated, but local members of Arizona's post-polio support group have a message: stay informed.
First, polio isn't gone.
The infectious virus that lives in the throat and intestinal tract before moving to the spinal cord may cause paralysis, permanent disability and can be deadly. While vaccines help prevent infection, the virus still exists and can be airborne and found in untreated water sources. There is no cure.
The disease alone can kill, and in one well-publicized case, a female victim died after a power outage because a back-up generator failed on the iron lung that helped her breathe, said Cece Axton of Sahuarita, one of nine polio survivors living locally.
Now 68, Axton caught polio at age 2, and like many who contracted it in the early to mid-20th century, she spent time in an iron lung — an archaic-looking, body-sized cylinder that compresses the chest to help sufferers breathe.
Once prevalent in the U.S., polio cases plummeted after a vaccine was introduced in 1957, but it still plagues a few countries. According to the Centers for Disease Control, as of last month, 56 cases of wild poliovirus had been reported this year — 40 in Pakistan and 16 in Afghanistan. In October, two vaccine-derived cases in the Ukraine were reported through the World Health Organization, prompting an immediate vaccine campaign there. Another 199 cases were suspected among people exposed but who showed no symptoms.
Although polio incidence has dropped more than 99 percent since worldwide eradication efforts began in 1988, cases still pop up. A wild strain from Guam and a girl from China, now 9 and living in Phoenix, who contracted it from the vaccine, are two known cases. They were among discussion topics at a Polio Epic board meeting Thursday in Tucson.
Axton, a past officer, is one of nine board members who attended.
Marking 30 years
The Tuscon Polio Epic board oversees educational efforts and general business for the non-profit polio support group, which networks with other such groups worldwide. They're preparing for the organization's 30th anniversary on Saturday, a dinner event in Tucson.
It's a momentous occasion for their 300 members, most of whom live in Arizona — nine in Green Valley/Sahuarita and about 80 in greater Phoenix, which recently disbanded its formal support group Polio Echo.
Participants range in age from the 50s to over 80. Two of its co-founders serve on the Epic board, Joanne Yager and Frank Frisina. Businessman Jim Click and Dr. Jon Larson, medical director of Healthsouth Rehab Institute also helped establish the organization.
The group once had enough Green Valley-area members to hold occasional meetings here but now meets monthly in Tucson.
There may be more polio survivors here now, but identifying them is tricky, Axton said. Many don't want to talk about their experience, others say they have issues. Despite initial effects — paralysis, breathing issues and reliance on limb braces, canes, walkers or wheelchairs — many survivors have faced their demons, are active, have altered their lifestyles to combat returning effects, and want to help others overcome similar challenges.
An estimated 50 percent of polio survivors are discovering 10 to 50 years after they were first infected, that they have symptoms of post-polio syndrome (PPS), a serious neuromuscular condition characterized by extreme fatigue, further weakness or paralysis in the limbs and other signs. It's often misdiagnosed because symptoms resemble other crippling neurodegenerative diseases, notes the CDC.
To pinpoint an accurate diagnosis and treatment, it's important for personal physicians to know if a patient has had polio, the group said.
Many polio survivors don't share that because they don't know about PPS and don't want the truth, said Lynn Cash, who also serves on Polio Epic's board.
“If they don't have it or know they have it, who cares? That's the attitude,” she said.
Long hospital stay
Axton recalls as a young child, her stay in an Illinois hospital, which lasted several months. Through a window, she watched visitors playing on the grass and waving to her. She cried after she was released and taken home.
“It was all so unfamiliar,” she said.
While she learned to live with leg paralysis, she remembers getting her feet stuck in the spokes of a relative's bicycle. Over the years, she had several surgeries on her leg and foot, all provided free through the Shriner's Hospital in Missouri.
She was luckier than many; some polio victims finished out their lives in an iron lung. To illustrate advancements against the disease — a major goal of Rotary International — members of a Tucson-area Rotary chapter showed an iron lung as part of a display a few years back. It didn't bother Axton, but she said other polio survivors couldn't go near it.
“It was pretty traumatic,” she said. “I realize since joining this support group how serious my case was.”
Axton has been active with Polio Epic for about eight years.
“I had the version that affected my leg and also lungs,” she said.
While signs of the virus date back to pre-history, it wasn't until President Franklin D. Roosevelt's case spotlighted it that there was earnest work toward a vaccine, Axton said.
The day news came that Dr. Jonas Salk's vaccine was declared a success — April 12, 1955 — is also vivid in her memory. The media came en masse; thousands of physicians stacked movie theaters nationwide to see the broadcast on closed-circuit TV.
“There were hundreds of people in the streets, churches rang their bells, kids got out of school,” Axton said. “It was huge.”
By 1950, the peak polio age in the U.S. was between 5 and 9, with about a third of the cases reported in ages 15 and up. The epidemic of 1952 was the worst outbreak in U.S. history. That year, 57,600 cases were reported; of them, 3,145 victims died and nearly 21,300 were left with mild to disabling paralysis, according to the College of Physicians of Philadelphia.
These days, Axton said she's taken aback by anti-vaccine hype and well-publicized claims that vaccines may lead to autism and other afflictions.
Polio Epic ascribes to the “We're Still Here” campaign begun in 2007 in Australia to remind the world that polio survivors are still around, active in their communities and contributing to society.
Spreading the word
At the core of Polio Epic conversation is spreading awareness of polio and PPS. About 100,000 polio survivors have developed the syndrome and numbers are growing, Epic members say.
Lifestyle changes, use of adaptive devices and education of survivors, family, friends and the medical community all help improve and maintain quality of life. New symptoms can be headed off and remaining strength, preserved.
Past the 30th anniversary mark, Polio Epic is pushing to continue awareness and immunization as frontline weapons in the fight against polio.
Members are always looking for fellow survivors, who are fairly easy to recognize once you know the signs, Axton said. They want to reach family, friends and caregivers as well. Some are members of Epic, even though they haven't had polio themselves, she noted. Epic recently provided information to a nurses' group at La Posada and will provide information to anyone, including medical professionals, who wants it.
Drawing more males to the support group is also important, said Epic member Karla Carr, who chaired last week's Tucson meeting.
“We've had guys take part but often then don't come back,” Carr said. “We need to talk about jobs, then they'll be more likely to get involved. They need it because they don't know what PPS symptoms are. Also, we can research their career to find strengths and skills for them to help as volunteers.”
The group also tries to raise funds through grants and donations to help polio survivors get their home safety-assessed and make modest changes that can make mobility easier.
Parents are another target group; they need to be able to recognize signs of infection, how to act quickly and know what might be ahead, Axton said.
Educating the public in general is also smart, the Epic board said. Axton said she was encouraged to meet a local student one day at her physical therapy session who said her school has a class that talks about polio and PPS. She hopes more can learn about it.
Carr, who lost the use of an arm to polio, told of a recent experience in line at the grocery store. A young boy offered to help with her cart. She told him what had happened to her arm, and asked him to remember what he learned and teach it to somebody else. She appreciated the help; he thanked her for the lesson, she said.
Kitty Bottemiller | 547-9732