At the age of 26 years, Cilla Webster thought her life was almost perfect. She had just had a baby and had a successful career as a legal secretary. Most importantly, she had been walking almost normally since the age of thirteen. This was thanks to a groundbreaking operation which restored the neurons damaged by the polio she contracted when she was 18 months old.
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Little did she know that at that point, after several years of leading a near-normal life, she was starting to develop post-polio syndrome (PPS). This is a disabling condition which strikes 76% of polio survivors 20 to 40 years after they have had polio.
Cilla first noticed weakness in her legs. The weakness gradually worsened and started to affect more muscles in her body. By the age of 32 years, she developed diaphragm difficulties which made it hard for her to breathe. Her condition continued to deteriorate and by 38 years, she had to be hospitalised because she no longer had the use of her legs and had severe breathing problems.
Cilla went from one doctor to another and was diagnosed with several different conditions, ranging from asthma to various neurological conditions.
Finally, in 1997 (22 years after her symptoms first appeared), everything started to fall into place. One night, Cilla did an internet search on Google, and the keywords “polio” and “pain” lead to several articles on PPS. She started e-mailing PPS specialists in the United States. They advised her to rest her muscles as much as possible. She now uses a ventilator at night to rest her diaphragm muscles and has stopped all forms of exercise.
What is PPS?
“PPS is caused by overuse abuse,” explains Dr Richard Bruno, Chairperson of the International Post-Polio Task Force and Director of the Post-Polio Institute. Nerves that were damaged by polio and had sprouted have been overworked for years and can no longer take the strain. Overworked muscles ache and joints also hurt after decades of doing too much work with too little muscle support. Ironically, it is those who have recovered best from polio and have been most active, who are hit hardest by PPS.
Should polio survivors be advised not to exercise at all? “One cannot do that,” says Cilla. “If you have had polio, you cannot prevent PPS and one cannot predict whether someone will develop PPS or not. Why restrict someone’s life if they might not even become one of the 76% who develop PPS. People just need to be made aware that PPS exists and educated about how to look after themselves, for example by not overexerting their muscles.”
“If I had known that such a syndrome existed, I would have led my life very differently,” says Cilla. “I was very active, I swam and walked a lot and even backpacked through South Africa – things I shouldn’t have done, but then I never even knew that PPS existed.”
Living with PPS
Although Cilla is now almost permanently bedridden, she keeps herself as busy as possible. When she learnt about PPS, she started the Post-polio syndrome support group and has received an international award for raising awareness about the condition.
“There are hundreds of people who are suffering. Some cannot afford wheelchairs or ventilators, some are just sent home to die, and others don’t even have access to basic information.”
She also launched a “Knit or crochet for polio” campaign in August to encourage parents to have their babies immunised against polio. Mothers who support immunisation campaigns are given blankets as a token of appreciation for being responsible parents. Immunisation is still the only way to prevent polio, and therefore PPS. Even though the last case of polio appeared in South Africa in 1989, cases have been reported in neighbouring countries where routine immunisations have not been maintained due to instability. Children are at risk as long as the poliovirus is circulating.
Fortunately we are starting to learn more about PPS. Several doctors around the world who have PPS and are too weak to do ward rounds or practise, have become involved in research on PPS.
Cilla refuses to give up. “If you ask me to stop hoping, you will take away my will to live. We all have the same 24 hours. What you do with it, is up to you.”
What are the early signs of PPS?
The symptoms and severity depend on the type of polio a survivor had, but the following symptoms are common in most people with PPS:
new fatigue
muscle weakness
joint and muscle pain
cold intolerance
sleep, breathing and swallowing difficulty
If you are concerned that you might be developing PPS, it is advisable to consult a neurologist as soon as possible.
Further information
For more information about PPS, contact Cilla Webster at the Post-Polio Network. Telephone / Fax +27 (0)39 973-1543 or e-mail postpolio@tiscali.co.za. Also visit their website at www.postpolio.co.za.
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