The National Institute of Allergy and Infectious Diseases (NIAID), a component of the National Institutes of Health (NIH), is a leading federal funder of research on infectious diseases.
What is post-polio syndrome?
Polio, or poliomyelitis, is an infectious viral disease that can harm the nervous system. Post-polio syndrome (PPS) usually occurs 15-40 years after the infection and recovery. PPS is believed to be the result of a deterioration of nerve cells called motor neurons over many years that leads to loss of muscle strength and dysfunction.
Polio and post-polio syndrome are caused by poliovirus. Unlike polio, PPS is not contagious. Only a polio survivor can develop PPS yet not everyone who survives polio will develop PPS.
The polio vaccine has essentially eradicated polio from the U.S. However, polio still exists in some countries and cases of PPS still arise.
Symptoms include:
- Slowly progressive muscle weakness
- Fatigue
- A gradual decrease in the size of muscles (muscle atrophy)
- Loss of muscle function
- Pain from joint degeneration
- Increasing skeletal issues such as curvature of the spine (scoliosis)
Most often, polio survivors start to experience gradual weakening in muscles that were previously affected by the polio infection. Some people may have minor symptoms while others develop visible muscle weakness and atrophy (wasting away). A person who was more acutely affected by polio and who had a longer recovery may experience a more severe case of PPS.
PPS is rarely life-threatening, but the symptoms can significantly interfere with a person's ability to function independently. Respiratory muscle weakness, for instance, can result in trouble with proper breathing, affecting daytime functions and sleep. Weakness in the swallowing muscles can result in food or liquids entering the airway or lungs and lead to pneumonia.
There are no laboratory or diagnostic tests for PPS. Physicians diagnose the condition after completing a comprehensive medical history and physical examination, and by excluding other disorders that might explain the symptoms.
There are currently no effective treatments that can stop deterioration or reverse the deficits caused by the syndrome itself, but exercise, mobility aids, and in some cases, breathing assistance may help with some of the symptoms of PPS. Lifestyle changes, such as weight control, the use of assistive devices, getting proper sleep, maintaining a well-balanced diet, and taking certain anti-inflammatory medications may help with some of the symptoms of PPS. Individuals with PPS should seek medical advice from a physician experienced in treating neuromuscular disorders.
How can I or my loved one help improve care for people with post-polio syndrome?
Consider participating in a clinical trial so clinicians and scientists can learn more about post-polio syndrome. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.
For information about participating in clinical research visit NIH Clinical Research Trials and You. Visit Clinicaltrials.gov to learn about any past and current clinical trials.
Where can I find more information about post-polio syndrome?
Information may be available from the following organizations:
Post-Polio Health International
Phone: 314-534-0475March of Dimes
Phone: 202-659-1800 or 888- 663-4637