For Rare Disease Day (28 February), I hereby state the case for Post Polio Syndrome. PPS is not so much ‘rare’, or even ‘medium rare’, but ‘rather underdone’. PPS affects 120,000 people in the UK; more than Parkinson’s, however this neurological condition – for which there is no cure – receives a fraction of the attention. We are the invisibles; yet there might be 40,000,000 of us worldwide. A rarely published fact.
While 86 percent of the public have heard of Parkinson’s, only seven percent know of PPS. Rare Disease Day is opportunity not only to educate, but to remind Polio survivors that we can help them. Whether it’s benefits advice or simply a friendly ear, we want to hear from you.
Having nearly lost my life at the age of 12 with encephalitis lethargica, and then again with Polio at the age of 22 – I was placed in an iron lung and now live with PPS myself – I know our charity’s true value. In helping our 10,000 or so members manage a devastating condition and cope with benefits and other daily hassles; inconveniences; upsets; and challenges, our ethos is true Fellowship. Helping just one of your readers with PPS would make this 28 February a rare success for me and our wonderful charity. Anyone in need of our support can call 0800 043 1935 (free), or visit https://britishpolio.org.uk/join-us/
National Chairman, The British Polio Fellowship