An estimated 500,000 to 700,000 polio survivors are alive in the United States today. Most are now experiencing post-polio syndrome (PPS), a late-onset condition that appears between 20 and 60 years after the original polio infection. PPS is not a recurrence of polio, but a progressive neurological syndrome that worsens existing disability or creates new disability where little or none previously existed.

For many survivors, the changes are profound. Individuals who lived for decades with minimal or no visible impairment are now experiencing muscle weakness, fatigue, pain, joint instability and loss of function. Survivors who once walked independently or with canes, crutches, or braces are now relying on wheelchairs. Those who never needed leg braces now find them essential. Survivors who experienced respiratory involvement during the original illness are once again facing breathing difficulties, sleep apnea and reduced lung capacity. These changes are not rare, and they are not imaginary. They are the predictable consequences of damaged motor neurons that were forced to compensate for decades.

Yet despite the size of this population and the seriousness of the condition, polio survivors are facing a healthcare system that is largely unprepared to care for them.

There are very few dedicated polio or post-polio clinics in major medical centers. Most medical schools teach little to nothing about polio or PPS. The physicians who treated polio patients in the 1940s and 1950s have retired or passed away. As a result, an entire generation of clinicians has entered practice with virtually no exposure to this condition.

When a polio survivor is referred to a specialist and asks what the physician knows about PPS, the answer is often “Nothing.” Those clinicians who do have knowledge typically gained it not through formal education but through a family member who was a survivor, or from learning directly from patients themselves. Two years ago, I was referred to an orthopedic surgeon who stated flatly, “There is no such thing as post-polio syndrome.” That denial, unfortunately, is not uncommon.

Anesthesia presents another serious and often overlooked danger. Polio survivors, whether or not they currently have respiratory symptoms, are at increased risk for complications related to anesthesia, including prolonged sedation, respiratory depression and difficulty being weaned from ventilatory support. Physicians, nurse anesthetists and dentists who use anesthesia must understand these risks before putting a survivor to sleep. Many survivors carry anesthesia warning cards to present before procedures—not out of paranoia, but out of necessity.

There is no single textbook on how to treat post-polio syndrome because such a book would be enormous. PPS affects each survivor differently, depending on which muscles were involved, how recovery occurred, and how the body compensated over time. Treatment is individualized and must balance function with energy conservation. Unless survivors educate their own physicians, the knowledge remains locked within the survivor community itself.

Physical therapy is another area where misunderstanding can cause harm. Traditional rehabilitation often follows the mantra “no pain, no gain.” That approach is dangerous for polio survivors. Overuse of weakened muscles accelerates further loss of function. Physical therapists must understand PPS before they can treat it safely, yet PPS is rarely taught in physical therapy programs. Well-intentioned therapy can quickly become destructive when clinicians do not recognize the unique physiology of post-polio muscles.

Ironically, polio survivors often receive their most accurate education not from healthcare professionals but from one another. Polio support groups, meeting in person or via Zoom across the country, have become essential centers of knowledge. Survivors teach survivors how to recognize symptoms, avoid overuse, advocate for appropriate care, and protect themselves within a healthcare system that does not recognize them.

Post-Polio Health International is the only national organization in the United States dedicated to distributing evidence-based information on PPS and providing speakers who can educate healthcare professionals. Without this organization, even less information would be available.

I have attempted to speak to medical students in their senior years and to physical therapy students, with limited success. Some survivors have been welcomed, but many programs are reluctant to allocate time. In contrast, I teach physician assistant and nursing students, and they are knowledgeable, receptive and able to hold informed conversations about post-polio syndrome. Education clearly makes a difference.

The problem, in part, is perception. The last outbreak was in 1969, and the last individual documented case of polio acquired in the United States since July 2022 was in a young man returning from overseas travel.  He was not immunized. Most polio survivors are now seniors, except for individuals who contracted polio in developing countries and later immigrated. Medical, nursing and physical therapy curricula are under constant pressure to prioritize conditions that are seen as “current.” Polio is viewed as a disease of the past—a medical has-been.

That perception is dangerous.

With increasing numbers of parents opting to forgo routine childhood immunizations, herd immunity is at risk. If vaccination rates drop below approximately 85 percent, community protection fails. When that happens, vaccinated individuals are no longer able to protect those who are unvaccinated. Polio epidemics can and will return under those conditions. Compounding this risk, two strains of poliovirus have already mutated in parts of the developing world, and existing immunity may not fully protect against them.

Polio is not transmitted only through contaminated food or water. It is also spread through respiratory droplets, a cough or sneeze from a person incubating the virus. The idea that polio is safely confined to history is a dangerous illusion.

I can only hope that medical, nursing and physical therapy programs will consider setting aside even three hours for a seminar on post-polio syndrome. Invite a knowledgeable survivor to speak. Reach out to a local polio support group or contact Post-Polio Health International. Listen to those who have lived with the consequences of this disease for a lifetime.

Polio survivors are not relics of the past. We are living reminders of what happens when medicine forgets.

Find Post-Polio Health International at https://post-polio.org/.

Michael Kossove writes Prof. Mike’s Health Corner for the River Reporter. He is professor emeritus and an adjunct professor of microbiology at Touro University’s School of Health Sciences. He is a polio researcher, international polio lecturer and polio survivor, and lives in Sullivan County, NY.