March of Dimes Reports
"International Conference on Post-Polio Syndrome: Identifying Best Practices in Diagnosis and Care"
Warm Springs Georgia, May 2000
Sponsored by March of Dimes
Post-Polio Syndrome: Identifying Best Practices
in Diagnosis and Care (#31-1522-01)
Guidelines for People Who Have Had Polio (#31-1523-01)
English, French and Spanish translations of these reports can be
accessed from the March of Dimes website.
After Effects of Polio Can Harm Survivors 40 Years Later; Few Doctors Recognize Little-Known Condition
WHITE PLAINS, NY – Up to 20 million polio survivors around the world face the threat of new disabilities 15 to 40 years after their original illness, which could leave them using wheelchairs or ventilators for the rest of their lives, says a new report from the March of Dimes.
A major problem confronting millions of polio survivors is that too few doctors, in both industrial and developing countries, recognize this slow moving and little understood secondary illness, called post-polio syndrome (PPS). The main symptoms of PPS are new progressive muscle weakness that gradually worsens, together with severe fatigue and pain in muscles and joints. It is often accompanied by decreased muscle endurance during activities.
No cure exists for PPS. Doctors advise patients to curtail physical activities and take rest periods during the day, including during working hours. Many doctors also advise more severely affected patients to use wheelchairs part-time or fulltime, even if they can walk without them.
As many as 40 percent of polio survivors may get PPS, according to some estimates. The March of Dimes, a nonprofit agency founded by U.S. President Franklin D. Roosevelt, who was a polio survivor, now is alerting medical systems around the world to PPS with its new report, Post-Polio Syndrome: Identifying Best Practices in Diagnosis and Care. It is also releasing a second report to assist people with PPS: Guidelines for People Who Have Had Polio.
As many as 250,000 US polio survivors may have PPS, the March of Dimes says. Some 40,000 polio survivors have PPS in Germany, 30,000 in Japan, 24,000 in France, 16,000 in Australia, 12,000 in Canada and 12,000 in the United Kingdom, according to local polio support groups and doctors. The World Health Organization estimates that 10 to 20 million polio survivors are alive worldwide, and some estimates suggest that 4 to 8 million of them may get PPS.
"In developing countries, where polio outbreaks still occur or have ended much more recently, medical systems will be facing PPS for decades into the future and have little knowledge or understanding of it," says Christopher P. Howson, PhD, director of Global Programs for the March of Dimes. "Even in advanced countries, and this includes the United States, many doctors are not trained to recognize PPS or are reluctant to treat it as a new condition."
Grassroots groups of polio survivors in North America, Western Europe, Japan, Australia and New Zealand have been the main advocates for increased medical and government attention to post-polio syndrome.
"The situation is less clear in developing countries, where the syndrome is even less recognized," says Dr. Howson. "Perhaps PPS is underreported because health care providers are not recognizing it. Or perhaps people who are more at risk of PPS in developing countries tend to die before they reach the age of recognized disease onset. Also, PPS seems to be more common and severe in people who have successfully rehabilitated themselves from the initial polio attack. Perhaps a lower percentage of people in developing countries have had the opportunity for rehabilitation and, thus haven't put themselves at additional risk of PPS."
More than 40 years ago, the March of Dimes completed its original mission to combat epidemic polio by supporting the development and widespread use of two effective vaccines, one by Dr. Jonas Salk and one by Dr. Albert Sabin. Today, the March of Dimes works to improve the health of mothers and babies, but it has not forgotten its historic legacy.