Letter to the Editor of the Las Vegas Review-Journal
Southern Nevada Association of Polio Survivors, SNAPS, is appreciative of the article on Post Polio Syndrome, PPS, that was written in the September 23 issue of the paper. We would like to add the following information. According to figures from the International Polio Network, there are between 12 and 20 million persons living in the world who had polio. Polio is still active in under-vaccinated children even here in the United States. Polio has not been eradicated anywhere in the world. Researchers have identified over 70 mutations of the original three polio types; so polio is still a threat. There have been estimated 1.8 million persons with PPS identified in the United States. 70% of those who had paralytic polio and 40% of those who did not have paralytic polio will have some form of PPS. These symptoms can range from mild to very severe and life threatening. The symptoms can occur as early as ten years after the initial contact or as late as 60 plus years. Much depends on the stress put on the damaged muscle nerves during the intervening years.
Polio in its initial attack resulted in polio encephalitis that caused brain damage and interruption in the pattern of motor neurons that control the function of the muscles in the body hence the paralytic result. Estimates are that nearly 50% of all muscle nerves were seriously damaged or destroyed in the original onset of polio. The symptoms of PPS are often confused with other conditions and must be identified by a process of exclusion. Those who suffer from PPS are not fighting a bout with the original disease again, but are dealing with the after effects of the original poliovirus attack. Symptoms of PPS include weakness, unusual fatigue including total body exhaustion, new muscle weakness, difficulty in swallowing and breathing, sleeping disturbances, lessening ability to tolerate cold, and many more. It was not until the late 1980’s that Social Security accepted PPS as a reason for approving disability claims. Many of us were identified with MS, ALS, Epstein Barr, and other neurological disorders before researchers were able to identify PPS as an individual condition.
As the article stated, many 2002 doctors have never seen a case of polio and are not enlightened about PPS. This why SNAPS has started a campaign to provide information to doctors about this condition. Since there is no cure, it is important to identify PPS early so that life style interventions can be started that could delay the onset of severe symptoms and could also assist those with PPS to live more comfortably. If anyone reading this had polio as a child or an adult and is finding unusual symptoms like those described above, please see your doctor and ask for a PPS evaluation. There is life after PPS. We have many many members who can attest to this. For additional information, research direction, and pamphlets to give doctors please contact the following: Sandra at 648-1872; Bobbi at 896-7588; Dianne at 644-5091; Esther at 458-1613; or Myrna at 434-5212. We can give you information about PPS, direct you to that information, assist you in locating physicians who are aware of PPS, and be a support to you. We thank the Las Vegas Review Journal for bringing this to the attention of the public. PPS is an orphan condition that has little support and few resources for research funding. An informative book on this subject just came out late this summer. It is “The Polio Paradox” “What you Need to Know” written by Richard L. Bruno, H.D., PhD. Dr. Bruno is one of the leading researchers on PPS along with Dr. Lauro Halstead and Dr. Julie Silver among others. The book is available on Amazon.com and in bookstores.
SNAPS Board of Directors