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The Names and Faces of Post Polio Syndrome

 

At Global Poverty Project, polio's last percent is never far from our minds. This highly infectious, debilitating and potentially fatal disease was endemic in 125 countries in 1988 is today only endemic in three. Seeing countries such as Angola and India removed from the list of endemic nations serves as proof that a highly common, infectious disease can be eradicated through joint efforts.

But as we celebrate the progress that has been made and focus on eradicating the remaining 1% of polio globally, it is easy to forget the survivors at home who live with its effects decades after first falling ill. When paralympians Ade Adepitan and Anne-Wafula Strike met with new Secretary of State for International Development Justine Greening in Parliament last week, they were joined by three members of the Witney, Putney, and Wood Green constituencies who have survived polio and strive to help others do the same.

Brenda Williamson, 82, Sandra Swalline, 72, and Lillian Anane, 50, all participated in the photo op hosted by GPP's "The End of Polio" campaign. It culminated in UK Government Relations Coordinator, Sam Bacon, handing a petition to MP Greening that called on the UK government to continue its commitment to financial funding of global polio eradication. Originally from the UK, California, and Ghana, Brenda, Sandra, and Lillian, respectively, used their life experiences to remind the public that whilst a new case of polio has not been seen in the UK since the 1980's, its impact remains alive yet is often under acknowledged or ignored altogether.

The National Institute of Neurological Disorders and Stroke (US) estimates that in the wake of the disease that crippled around 35,000 Americans per year between the late 1940s and early 1950s, post polio syndrome (PPS) impacts somewhere between 25 and 40 percent of polio survivors. Characterized by alternating periods of stability and decline, PPS can occur at any age and remains a mystery to health care professionals. Its status as a relatively unknown illness is a reality that Brenda, Sandra, and Lillian live with firsthand.

A native of California who has lived in London for 40 years, Sandra contracted polio at the age of 20 from a student at the nursery school where she was a teacher. She lives with PPS symptoms including severe fatigue, increasing muscle weakness, and overall loss of function, and says she has had to educate doctors numerous times on what PPS is. She has given a talk to her local rotary group about polio and PPS, taking steps to educate the public on the lasting impact of a disease many have already confined to the history books.

"I think one has to start [education initiatives] first with GPs," Sandra told me. "Many of them have never heard of it, so that's the first thing. I think it's important to start with the health care professionals."

Lillian agrees, but is also quick to praise the medical attention that has helped her manage the polio that she contracted at age six in her native Accra. Upon moving to the UK in 1987, she earned her BA in Social Policy from Middlesex University in 2003 and has worked as an ESL teacher in London for the past nine years.

"I can't actually walk properly," Lillian said. "I have [had] surgery surgeries quite a lot to help me walk properly, and then I've got hospitals to attend for them to teach me how to walk, which is actually wonderful. If we have any problems, the British Polio Fellowship listens to us and takes them on board. And I think that's a good thing, because that means we get heard."

Originally from Northeast Cheshire, Brenda contracted polio in 1936 from contaminated seawater in North Wales. Her mother, a nurse, bucked with medical tradition and urged her daughter to sit up rather than constantly lie down. A kitten brought home by her father motivated Brenda to crawl on her hands and knees, increasing her mobility. But it was a teenage modeling course that she credits with helping her live a confident life.

"When I was 18, I was tall and uncoordinated, so I took a modeling course," Brenda said. "And that was the best thing I ever did. They made me walk straight and taught me how to carry myself. And that was the making of me becoming more independent."

The success of survivors like Brenda, Lillian and Sandra illustrates how polio can be managed despite never leaving a person's system. But limited knowledge of PPS makes acknowledgement, let alone treatment, a challenge that only continuous education, advocacy and government funding can improve.

"I went to my own hospital in Witney for balance lessons, and they taught me not to push myself when I was feeling exhausted and to pace myself," Brenda said. "You can do something about it to help it. And if people can recognize that this is a real condition, then they would know better how to treat it."

Sandra echoed these sentiments, reinforcing the need to eradicate polio globally as well as creating heightened awareness of its effects in our backyard.

My campaign would be entitled, "We're still here." Just because polio has been eradicated [from the UK] doesn't mean that there aren't many people still living with it."

Posted by Lauren Maffeo in Polio for column Issue Analysis on Sep 21st 2012, 07:30

Comments

22/09/12 8:04pm - Posted By Tricia Malowney - Flag as inappropriate - Reply to this comment
I have succeeded because I had polio, not despite it. We are about to celebrate 25 years of the polio network in Victoria Australia, which was formed to bring together those of us who had polio and who were starting to have some concerns about what we now know to be post polio syndrome. While we advocate for vaccination, we still remind our community that we are still here. We provide peer support to assist others not to over do it (a common problem for us polios) and to support those young polios who contracted polio before immigrating to Australia. We remind them not to do as we did and overdo it, but to conserve our strength to ensure we can keep on going. Thanks for providing information I can share with others on Facebook.,
23/09/12 4:21am - Posted By Mercedes GARELLO - Flag as inappropriate - Reply to this comment
Hola: Soy Argentina, escribo en espa?ol porque no se hablar ingl?s. Contraje poliomielitis a los 2 a?os de edad en una endemia que afect? a mi pa?s en 1957... Quisiera recibir mas informaci?n sobre en s?ndrome de PPS, hoy tengo 56 a?os, o sea que hace 54 que estoy afectada en brazo izquierdo y pierna derecha, me he preparado para hacer casi todo sola en la vida, pero cada vez me siento mas agobiada... y es que el resto de mi cuerpo que est? sano hace doble esfuerzo para hacer las cosas y as? me est? yendo... mi brazo derecho est? muy cansado... y en este pa?s no hay pol?ticas de Estado con tratamientos diferenciados para personas con poliomielitis...Es como que se trata de algo que ya fue. Por suerte est? eliminada la polio de Argentina, hace bastante tiempo, pero los que sobrevivimos y quedamos muy afectados no contamos con ninguna ayuda...
Agradecer? enviar material sobre PPS... Me ha aparecido una sordera moderada y la m?dica me dice que es a consecuencia de la poliomielitis que me afect? el nervio auditivo cuando era chica... nunca lo supe hasta ahora que tengo estos s?ntomas
MERCEDES
24/09/12 8:37am - Posted By Fran Henke - Flag as inappropriate - Reply to this comment
Agree with Tricia and thank you for running this story. In the campaign for eradication if polio survivors had been remembered and included we could have made an important contribution. We are driven individuals, as Tricia said, as result of polio. We do not want to see anyone else go through what we have. Proper treatment of those children who missed out on vaccination is vital or they will struggle to live the amazing life they were destined for. There is a Facebook page, Post Polio Universal, linking people around the world with polio in home languages. We welcome everyone...
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