Post-Polio Syndrome: Why It’s Time the World Learned About It

Today there are over 150,000 polio survivors living within the UK, who, like myself, are now living with the late effects of polio, or post-polio syndrome (PPS).

When we left the hospital after the initial virus attack, we were told that from then on, all would be stable. How wrong the medical profession was, and because of this, they are ignoring the late effects of polio, so easily managed and prevented.

A Bit of History

For years, most of these polio survivors did live active lives, their memory of polio long forgotten, their health status stable. By the late ’70s, polio survivors were noting new problems of fatigue, pain, and additional weakness. By the mid-’80s, health professionals and policymakers recognised these new problems as being real and not “only in the patients’ minds.” Studies on this phenomenon called post-polio syndrome have been – and are still being – conducted in research institutions and medical centres.

PPS is one of the most debilitating motor neuron degenerative conditions in the world, and as it was totally unexpected, the medical profession, health authorities, and governments know so little about the condition that it is almost impossible to receive any advice on the management or long term care.

These disabilities and paralysis are certainly not inevitable, and can be easily controlled by the polio survivor, given the correct information, without medicines or drugs, save those required for possible pain relief. The only reason that these symptoms progress is by being ignored!

The Problem and Our Solution

Unfortunately, this information is not reaching millions of polio survivors not only here in the UK but more particularly in many third world countries, where survivors struggle to provide for themselves and their families despite the result of the virus, but now even more so with the progression of PPS.

We are endeavouring to establish a network of mobile clinics around the world, where this information will be made available to as many Polio Survivors as we can, and to raise the awareness of this condition, and empower every Polio Survivor to have access to medical, welfare, and social support, whatever their home country.

It will take so little to prevent these additional issues that polio survivors have to live with, yet nobody Is prepared to take notice, and instead stare straight ahead, blinkered to the pain and suffering that we are all facing today.

To achieve our aims we are, initially, seeking medical professionals with knowledge and experience of PPS, or alternatively are prepared to learn how to properly manage and therefore halt the symptoms of PPS, and to make contact with governments, health authorities, medical colleges, and grant organisations, so that they are aware of the devastating conditions that this new and unexpected problem is forcing us to live with.

 

 

 

Peter Thwaites is Principal CEO at The World-Wide Fellowship of Polio Warriors and a Polio Survivor determined to ensure that the long-term care of every survivor is correctly managed, whatever their home country.