Hasta 20 millones de sobrevivientes de la poliomielitis alrededor del mundo hacen frente a la amenaza de nuevas inhabilidades 15 a 40 años después de su enfermedad original, que podría dejarlas que usaban los sillones de ruedas o los ventiladores para el resto de sus vidas, dicen un nuevo informe a partir de March of Dimes
Un problema importante que enfrenta a millones de sobrevivientes de la poliomielitis es que demasiados pocos doctores, en países en vías de desarrollo industriales y, reconocen esta enfermedad entendida móvil y poca secundaria lenta, llamado el síndrome de la post-poliomielitis (SPP). Los síntomas principales del SPP son la nueva debilidad progresiva del músculo que se empeora gradualmente, junto con fatiga y dolor severos en músculos y empalmes. Es acompañado a menudo por resistencia disminuida del músculo durante actividades.
Ninguna curación existe para el SPP. Los doctores aconsejan a pacientes acortar actividades físicas y tomar periodos de descanso durante el día, incluyendo durante horas de funcionamiento. Muchos doctores también aconsejan a pacientes más seriamente afectados utilizar los sillones de ruedas por horas o a tiempo completo, aunque pueden caminar sin ellos.
Tanto como 40 por ciento de sobrevivientes de la poliomielitis pueden conseguir el PPS, según algunas estimaciones. La marcha de monedas de diez centavos, una agencia no lucrativa fundada por los EE.UU. Presidente Franklin D. Roosevelt, que era un sobreviviente de la poliomielitis, ahora está alertando sistemas médicos alrededor del mundo a SPP con su nuevo informe, síndrome de la Post-Poliomielitis: Identificar las mejores prácticas en diagnosis y cuidado. También está lanzando un segundo informe para asistir a la gente con el SPP: Pautas para la gente que ha tenido poliomielitis.
Tanto como 250.000 EE.UU. los sobrevivientes de la poliomielitis pueden tener SPP, dice Marcho of Dimes.
Unos 40.000 sobrevivientes de la poliomielitis tienen el SPP en Alemania, 30.000 en Japón, 24.000 en Francia, 16.000 en Australia, 12.000 en Canadá y 12.000 en el Reino Unido, según grupos y doctores locales de ayuda de la poliomielitis. La Organización Mundial de la Salud estima que 10 a 20 millones de sobrevivientes de la poliomielitis son mundiales vivo, y algunas estimaciones sugieren que 4 a 8 millones de ellas pueda conseguir el SPP
“En los países en vías de desarrollo, en donde los brotes de la poliomielitis todavía ocurren o han terminado mucho más recientemente, los sistemas médicos serán los revestimientos PPS por décadas en el futuro y tener poco conocimiento o comprensión de ella,” dice a Christopher P. Howson, Ph.D., director de los programas globales March of Dimes “Incluso en los países avanzados, y esto incluye los Estados Unidos, no entrenan para reconocer el SPP o son a muchos doctores renuentes tratarlo como nueva condición.
Los grupos de los pueblos de sobrevivientes de la poliomielitis en Norteamérica, Europa occidental, Japón, Australia y Nueva Zelandia han sido los abogados principales para la atención médica y del gobierno creciente al síndrome de la post-poliomielitis.
“La situación está menos clara en los países en vías de desarrollo, en donde el síndrome no se reconoce incluso menos,” dice a Dr. Howson. “Quizás el SPP está no esta reportado porque los abastecedores del cuidado médico no lo están reconociendo. O quizás la gente que está más a riesgo de SPP en países en vías de desarrollo tiende para morir antes de que ella alcance la edad del inicio reconocido de la enfermedad. También, el SPP se parece ser más común y severo en la gente que se ha rehabilitado con éxito del ataque inicial de la poliomielitis.
Quizás un porcentaje más bajo de la gente en países en vías de desarrollo ha tenido la oportunidad para la rehabilitación y, así no se ha puesto en el riesgo adicional del SPP. Hace “más de 40 años, March of Dimes terminó su misión original para combatir poliomielitis epidémica apoyando el desarrollo y el uso extenso de dos vacunas eficaces, uno del Dr. Jonas Salk y uno del Dr. Albert Sabin. Hoy March of Dimes trabaja para mejorar la salud de madres y de bebés, pero no se ha olvidado de su herencia histórica.
Historias Lucile Harford de dos sobrevivientes las’, un americano, y Zohra Rajah de Isla Mauricio son dos sobrevivientes de la poliomielitis de diversas regiones del mundo que historia con el SPP es similar a muchos con esto condición pequeño-entendida.
Lucile Harford, ahora 88 años y retirado en la Florida, poliomielitis contraída (entonces llamada “parálisis infantil”) en 1925 en su ciudad natal de Ginebra, Nueva York, cuando ella tenía 12 años. Una muestra roja grande de la cuarentena fue puesta en su puerta delantera, causándole casi tanto miedo como la enfermedad, y haciendo los días y las noches solos para ella, puesto que nadie deseó ir cerca de ella. Los brazos, las piernas y la parte posterior de Lucile fueron paralizados. Era dos años antes de que ella podría volver a la escuela.
“No podría caminar, no podría utilizar mis brazos,” ella dice. “No podría incluso incorporarme. Era una enfermedad muy dolorosa, también. No hay terapia física disponible, como allí ahora está. En el país me trataron. Mi doctor no tenía una pista cómo ayudarme. “
“El énfasis era conseguirme a camina otra vez,” ella dice. “Que quizás era una llamada pobre del juicio. Caminé antes de mis caderas y las rodillas eran bastante fuertes, causando daño irremediable. He podido nunca desde entonces subir pasos sin sostener sobre el pasamano o levantarse fácilmente de una silla. “
Señora. Harford finalmente recuperó el uso completo de ella los brazos y parte posterior y podía caminar con un bastón. Ella graduó de universidad, tenía una carrera acertada y una unión feliz.
Sintiendo el estigma de la inhabilidad poliomielitis-causada, ella habló de sus limitaciones o reconoció raramente que ella había tenido poliomielitis. Durante los años 50, cuando las epidemias de la poliomielitis estaban en su pico, ella sufrió nueva dificultad en caminar y la fatiga que sus doctores la aseguraron no tenía nada hacer con poliomielitis. Lectura del síndrome de la post-poliomielitis, ella intentó interesar a sus doctores en el desorden. “A este día,” ella dice, “es difícil encontrar a un doctor que diga que hay una cosa tal como el SPP. ”
“Consiguió lentamente peor,” ella dice. “No durante la noche, solamente meses del excedente, años. Muy frustraba. Fui de usar un bastón a dos bastones, entonces un caminadora, y finalmente a tiempo completo a un sillón de ruedas. “
What Causes PPS?
“The causes of PPS are not thoroughly understood,” says Lewis P. Rowland, M.D., professor of neurology at Columbia University College of Physicians and Surgeons in New York City and chairman of the March of Dimes Steering Committee on Post-Polio Syndrome.
“In the initial acute polio episode, patients can lose up to 60 or 70 percent of their motor nerve cells. The surviving nerve cells find muscle fibers that still work and attach to them, restoring function. After 15 to 40 years,” Dr. Rowland says, “the ability to maintain function seems to be lost, but no one is certain why this happens.”
The most widely accepted hypothesis is that PPS results from a degeneration of motor nerves that sprouted new connections years earlier to make up for other nerves killed by polio. Because the surviving motor nerves have been supplying many more muscle fibers than nature intended, they may wear out prematurely.
The normal aging process and the overuse or disuse of muscles may be contributing factors in development of PPS.
“We are having difficulty in alerting the world medical community to the problems of PPS,” says Dr. Rowland. “The problem will go on much longer in other countries, especially in the developing world, so it is important that people learn about PPS. Most doctors in their 40s or younger in developed countries have never seen a case of polio, or recognized a case of PPS.”
The March of Dimes Steering Committee found that medical knowledge and commitment to treating PPS varies widely in industrial countries, while knowledge is much lower in the developing world.
PPS first came to wide attention in the medical community during the 1980s — three decades after the worst polio epidemics in the United States, which struck more than 50,000 people in 1952 alone. Up to 250,000 U.S. polio survivors may have PPS, the March of Dimes says.
“After the vaccines came out, the medical profession and the public in general all thought polio was over with,” says Lauro Halstead, M.D., of the National Rehabilitation Hospital in Washington, D.C. and a member of the March of Dimes Steering Committee. Dr. Halstead was struck with polio as a college student in the 1950s. The disease temporarily paralyzed his right arm and put him in an iron lung and then a wheel chair.
“I made a good recovery, finished college and medical school,” Dr. Halstead says. “But I began experiencing new weakness in the early 1980s. Doctors had no idea what I had, with some suggesting multiple sclerosis and others, Lou Gehrig’s disease. I think a million dollars was spent on tests, but doctors just couldn’t figure it out. I had new weakness in my legs and very intense muscle pain that was reminiscent of the pain I had with polio. I began to wonder if it was connected.” When he met David Wiechers, M.D., who was studying polio, the pieces of the puzzle came together. Dr. Halstead was diagnosed with PPS.
In 1999, in response to requests from a growing number of physicians and polio survivors, the March of Dimes convened an international steering committee of experts chaired by Dr. Rowland. The committee was charged with addressing an issue of critical importance: the need for improved knowledge among health care providers and polio survivors of the best practices in diagnosis and care for PPS. This steering committee drafted the two reports released today by the March of Dimes.
“These reports represent the collective wisdom from post-polio syndrome research and experienced clinicians,” says Joan Headley, executive director of the International Polio Network. “The information contained in them is invaluable. Individuals and professionals who have read confusing and conflicting information about PPS will find these reports clarifying.”
Some 15,000 polio survivors live in Sweden, says Gunnar Grimby, M.D., professor emeritus and former head of the Department of Rehabilitation Medicine at Sahlgrenska University Hospital in Göteborg, Sweden.
Polio survivors began to complain of symptoms consistent with PPS in large numbers during the early 1980s, Dr. Grimby says. “Initially, Swedish doctors did not recognize the disease, but beginning in the early 1990s, there was enough knowledge that the national medical system began to fund PPS rehabilitation,” he says.
Thirteen of Sweden’s 26 counties have special PPS clinics, with several counties having more than one. Current medical students get only a one-hour lecture in polio and post-polio syndrome at Sahlgrenska University Hospital.
“The clinic treats several hundred people with PPS, and 50 to 80 percent of them have progressive muscle pain and weakness,” says Dr. Grimby. “The others have more minor weakness problems or their condition is not progressive. Some 20 percent use a wheelchair. Some were advised to use the wheelchair but about one-half declined; some used it before getting PPS.”
Sweden is also receiving an increasing number of immigrants from Africa and the Middle East where polio is still prevalent. Some 25 percent of the polio patients at Sahlgrenska University Hospital are immigrants, including those from Albania, Turkey, and countries of the former Soviet Union.
“PPS will be a problem in Sweden for decades to come,” Dr. Grimby says. “Most people with PPS have to be in contact with medical personnel for the rest of their lives. They need regular physical therapy and technical aid.”
Some 30,000 polio survivors live in Japan, where they get widely divergent treatment from Japanese doctors, says Kimiko Negayama, president of the “Living Well with Polio Association” in the southern city of Kitakyushu.
Only a small number of Japanese doctors have recognized PPS as a separate medical condition, Ms. Negayama says. “Knowledge of PPS is slowly being disseminated by newspaper articles, by patient self-help groups and by some medical doctors,” she says. “The Japanese government has not yet recognized post polio syndrome as a condition that merits special attention.”
Polio epidemics ended in Japan by 1963. However, it was not until October 2000 that polio was officially declared eliminated in Japan.
No statistics exist about the total number of PPS patients being treated in Japan. The number of those with PPS probably has not yet peaked in Japan, Ms. Negayama adds.
An estimated 20,000 to 30,000 polio survivors live in Canada. The western province of Manitoba, which has an overall population of about one million, has 3,000 polio survivors, says Ken Pearn, voluntary president of the province’s post-polio network.
Mr. Pearn contracted polio in 1952, when he was nine years old. Initially, he was partly paralyzed on his left side and was hospitalized for 14 days. The disease left him with a residual weakness on that side and curvature of the spine that prevented him from entering the police force, but did not affect him much otherwise. He played baseball, hockey, football and rugby as a teenager and took up rugby again after 20 years. Five years ago, the entire left side of his body became weak.
“I can barely lift my arm over my head now,” says Mr. Pearn. “It affects my left shoulder and back. I noticed a gradual weakening. I panicked and bought weights, thinking it was aging. I didn’t realize that I might have been straining myself more. Finally I saw a general practitioner.”
The GP sent Mr. Pearn to a neurologist, who considered various neurological diseases, but could not reach a diagnosis. Mr. Pearn finally went to another doctor who had experience with polio. That doctor told Pearn that he didn’t have standard PPS, but said he didn’t know what he did have.
“I know a lot of members of my organization say they cannot get properly assessed without going all the way to Edmonton or Vancouver,” Mr. Pearn adds.
Some 40,000 polio survivors live in Australia, says Peshotan Katrak, M.D., deputy director of rehabilitation medicine at Sydney’s Prince Henry Hospital. Dr. Katrak says he has seen about 400 PPS patients over the past six years. The province’s PPS network has some 700 members.
“There were not many doctors seeing polio patients in Sydney, so Prince Henry Hospital started a post-polio clinic,” Dr. Katrak says. “Many people have to travel for hundreds of miles to visit this clinic. There are very few post-polio clinics in Australia and they are located primarily in the larger cities. The clinic staff are involved in the care of patients with disabilities related to polio and a variety of other conditions.”
Dr. Katrak’s clinic offers a full medical assessment of patients, then refers them to local general practitioners who are experienced with PPS. “I think it is very important for post-polio patients to see someone who understands PPS, who can help them manage their problems,” Dr. Katrak says.
Some 100,000 polio survivors live in Germany, says Bettina Beck, M.D., a neurologist at a rehabilitation clinic outside Munich.
Widespread knowledge of PPS came to Germany about 10 years after the United States and Canada. “Around 1989 or 1990, we began to see polio patients with new symptoms but we didn’t know why,” says Dr. Beck. “I contacted other doctors in polio societies, and we learned a lot, especially from colleagues in the United States.” Dr. Beck attended several PPS clinics in the United States to receive training in the treatment of patients with the condition. Her clinic determined how to treat such patients only some five years later, and then published a paper about PPS in Germany. “Once we did that, we received many calls from PPS patients who said we were the first in our country to recognize the condition. There were many cries for help,” Dr. Beck says.
“Neither medical personnel nor health insurance companies have generally accepted PPS,” she says. “There are some doubts about it among doctors. Insurance companies refuse to pay for certain modern drugs that help to relieve PPS pain and weakness. They also won’t pay for modern wheelchairs, telling me, ‘That guy can walk, he doesn’t need one.’”
Dr. Beck says many of her patients have gone back to wheelchairs after decades because of PPS. “We encourage them to use wheel chairs,” she says. “There is some resistance. They tell us, ‘I fought to get out of the wheelchair and now you tell me to go back in?’”
Polio survivors who hold disability cards — the only official way to estimate their numbers — total some 50,000, according to Anita Molines of the French Post-Polio Group. “But we think there are 5,000 to 10,000 more without this card. So the estimate is that there are 55,000 to 60,000 polio survivors in France,” she says. No official estimate exists in France of the number of PPS patients.
Polio was not eliminated completely in France until 1982. The first people with PPS symptoms presented in the early 1980s. The main symptoms reported were fatigue, pain and loss of physical abilities.
“French doctors still do not take these symptoms seriously,” says Ms. Molines. “Today, most of them don’t recognize PPS. Polio was taken off the medical school curriculum a long time ago. However, courses about polio and PPS are scheduled to be taught beginning in September of this year in every university in France.”
In Paris, some hospitals or centers have set up clinics for polio survivors, but most are open just one day a month. “We are trying to set up a polio survivors medical network in the Parisian region,” says Ms. Molines. “To date, the French government has not recognized PPS as a separate condition.”
“No specific treatment is available for PPS patients at the moment,” says Ms. Molines. “Generally, doctors are at a loss about how to help us.”
The number of polio survivors in the United Kingdom is now put at around 30,000, although it may be greater, says Andrew Kemp of the British Polio Fellowship (BPF). He says many have complained of the poor medical treatment that they get when they develop PPS symptoms.
“I began working for the BPF in 1990 and a relatively small number of members reported new difficulties to us then,” Mr. Kemp says. “Gradually, the numbers presenting with PPS symptoms have increased year by year. I know it’s unfair to generalize, but a large number of our members have been disappointed with the care they’ve received.”
The UK Parliamentary Under Secretary of State, Yvette Cooper, recently issued an official statement acknowledging the existence of PPS. Some British physicians and other health care professionals readily acknowledge that PPS exists, Mr. Kemp says. However, too many others do not recognize PPS as a real condition. Some health professionals “dislike the term post-polio syndrome,” he says. He believes that awareness of the condition among health care professionals is improving, but not fast enough.
“In 1998, when we surveyed our members, 98 percent of respondents thought that they had new physical problems caused by their polio, but 66 percent of general practitioners did not attribute such problems to PPS,” Mr. Kemp says.
How to Order Reports
In addition to the free download from the March of Dimes Global Programs website, single printed copies of both reports are available free. Contact the International Polio Network by phone at (314) 534-0475, or by email to firstname.lastname@example.org, or in writing to 4207 Lindell Boulevard, #110, St. Louis, MO, 63108-2915.
To order in bulk quantities, contact the March of Dimes Fulfillment Center by calling toll-free in the United States at 1-800-367-6630. There is a fee for shipping and handling. Please order by item number:
#31-1522-01 Post-Polio Syndrome: Identifying Best Practices in Diagnosis and Care (each)
#31-1523-01 Guidelines for People Who Have Had Polio (25 per package)
About March of Dimes
The March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. The March of Dimes is the leading nonprofit organization for pregnancy and baby health. For more than 75 years, moms and babies have benefited from March of Dimes research, education, vaccines, and breakthroughs.
For the latest resources and health information, visit our websites marchofdimes.org and nacersano.org. To participate in our annual signature fundraising event, visit marchforbabies.org. If you have been affected by prematurity or birth defects, visit our shareyourstory.org community to find comfort and support. For detailed national, state and local perinatal statistics, visit persistats.org. You can also find us on Facebook or follow us on Twitter.