newjerseynewsroom.com

BY VELIKO "LEE" BEKIR

COMMENTARY

For many Americans, "Polio" is a word with relatively little meaning.

They might recognize it as a disease. They might associate it with developing countries. They might even recall that America's 32nd President, Franklin Delano Roosevelt, lived much of his life in a wheelchair because of it.

But that's all. They know very little else. No real understanding of its causes or effects. No real sense of its history or current prevalence. And most significantly, no real awareness that Polio is still very much with us — here in the United States and here in New Jersey.

At present, there are an estimated 775,000 polio survivors in the United States, including an estimated 30,000 in New Jersey alone. Most contracted the highly-infectious disease when they were young children, and most contracted it decades ago, before the widespread Polio vaccination program started in the late 1950s. Since then, new cases of Polio in the U.S. have been extremely rare.

Needless to say, that is comforting to the hundreds of millions of Americans, who have been spared this sometimes merciless disease. But it is little consolation for the hundreds of thousands of survivors and their families whose lives have been dramatically impacted by its debilitating effects.

The increasing muscle weakness. The aches and pains. The breathing problems. There is no cure. There is no magical medicine to be taken, no magical procedure to have done. Once contracted, Polio stays with you for life.

Most survivors know this and have learned to live with it and overcome it. But for many of those with Post-Polio Syndrome (PPS), this life sentence may come as a very unwelcome surprise.

Although relatively unknown, PPS is fairly common among Polio survivors. As many as 55% could experience it. That is an estimated 440,000 in the United States, including 16,500 in New Jersey alone.

Simply stated, PPS is a set of often devastating symptoms that sometimes strikes survivors 15 to 40 years after the onset of the disease. It is a new condition, characterized by muscle weakness, breathing and swallowing difficulties, often overwhelming fatigue, cold intolerance, sleep disturbance, and pain, especially in muscles and joints.

Too often, those with PPS symptoms think they are merely experiencing the effects of old age. And too often, their doctors misdiagnose their condition.

Needless to say, this is not good. We Polio survivors deserve better.

It is therefore essential that Polio survivors become familiar with PPS and become aware of the physical limitations caused by it. We need to understand it. We need to accept it. And to the extent possible, we need to overcome it. To that end, those who may have PPS need to know that support exists. Throughout the country, there are local PPS groups to provide people with the physical, emotional, and psychological support they may need. In New Jersey, there are eight such groups under the umbrella of the Polio Network of New Jersey (PNNJ).

It is also absolutely essential that healthcare professionals become more aware of the symptoms and more aware of the implications of this condition. Although no PPS-specific remedies exist, misdiagnosis — or no diagnosis — can further jeopardize a person's health.

So as we recognize World Polio Day today, we have a lot to think about.

We should reflect on the history of Poliomyelitis — a virus-born infectious disease that has wreaked havoc on the lives of millions of individuals and whole communities. We should celebrate the progress made to eradicate this disease and the steps taken to treat the survivors. But we should also recognize that Polio remains a serious health challenge for millions of people throughout the world, including here in the United States and here in New Jersey.

In that context, we should view World Polio Day as an opportunity to think anew about this often debilitating disease and to recommit ourselves to providing survivors with the care and support we deserve.

Veliko "Lee" Bekir, a Polio survivor with PPS, is the President of the Polio Network of New Jersey (www.njpolio.org), a support and advocacy organization comprised of Polio survivors, families, friends and healthcare professionals.