Coral Williams and her daughter Angela from Cwmbran in south Wales are raising awareness of the legacy of an infectious disease in Wales. Here they explain why:
Coral said: “My daily life and sometimes even taking a breath is a struggle for because of living with the late effects of Polio and Post Polio Syndrome (PPS).
And my daughter Angela Locke is so desperate to make a difference to my life and others that she is using money from the National Lottery Community Fund to raise awareness of the syndrome in Wales where awareness levels are the lowest in the UK.
I had polio when I was just three which left me needing to wear a calliper because of the way it weakened my left leg. And then decades later I started showing symptoms of PPS, including breathing difficulties and falling over backwards, which have steadily worsened over the years. I now need to wear a calliper again for walking but mainly get around using a scooter or wheelchair.
But despite constant pain and struggles I have been determined to help raise awareness. After volunteering for the Welsh Region of the British Polio Fellowship I’ve handed the reins to Angela who has used £4,882 from the National Lottery Community Fund’s Awards for All to hold an information day at the Senedd in Cardiff.
Of around 120,000 people in the UK who had polio, it is estimated that 12,000 are in Wales – and many more who never knew they had it. Research by YouGov reveals a significant awareness problem. PPS and the Late Effects of Polio are barely even recognised by Welsh people as medical conditions.
Polio is a viral infection that used to be common in the UK with most people fighting it off with even realising they were infected. Others would have paralysis, muscle weakness and shrinking of muscles. Post-polio syndrome is where some of these symptoms return or get worse many years or decades after the original infection. Other signs include extreme tiredness, muscle and joint pain and sleep apnoea.
Symptoms returned for me in 1984 with a heavy bout of bronchitis. It started to affect my left leg again meaning I was dragging it and then slowly my mobility got worse and worse. It was such a shock when it returned because I thought I had it and was over it. It can get me down and it’s a burden at times bit you’ve really just got to try and get on with it.
Over the years the fellowship has helped raise awareness and also identify people who have PPS who might not have known it so that they can then get information and support.”
Angela, 46, who is now chair of the Wales’ region, said she first got involved with the group after taking her mum to the British Polio Games 15 years ago. Once a year sufferers from across the UK play games like darts, dominos and Scrabble.
Angela said: “I wanted to get involved because my mum inspired me too. I just want more people to be aware but finding people who know about it and people who can talk about it is the hardest battle.
Fresh from the success of the National Lottery funded event at the Senedd, I’m determined to keep on spreading the word. The more people talk about it the more help people can get.”