There are a few rare examples, within this ultra-rare community, of people who push themselves to extraordinary feats of physical endurance. We know of one gentleman in the USA who ran a Marathon recently, and another in South Africa who regularly competes in endurance cycling events. Their experiences would seem to suggest that exercise is not quite so damaging as current advice to patients would suggest. But we must all be careful not to over-strain our weaker muscles.
Research at the Erasmus Pompe Centre in Rotterdam found that the muscles of Pompe mice are able to repair themselves when damaged by trauma. But not when they are damaged by Pompe disease. The reasons are complex and not yet fully understood, but the research may be helped by understanding the experiences of individuals within the Pompe community. Whilst we would certainly not suggest that people start to push themselves without proper medical support; we would like to hear more about the experiences of people who already undertake physical activity, at all levels, to see if there are avenues that might deliver benefit to the wider population. We have contact with research centres around the world who would be very interested to hear of these experiences and together we can develop research projects to see what works well and what should be avoided.
Facebook group for Exercise
To join the Facebook group, you must first join the Pompe Support Network
Ismail, now 19, is passionate about wheelchair football, playing regularly for the Bolton Bullets using a specially adapted chair shown above. There is no doubt that the sport contributes to the wellbeing of this bright young bolton lad.
I remember the time when Ismail was the first British child to receive enzyme replacement as part of a clinical trial in Essen, Germany back in 2002. His return to England, after a family tragedy, was the event that enabled the UK to have its first Pompe clinical trial centre in Manchester, under the late Dr. Ed Wraith. It certainly brings a warm glow to my heart to see Ismail thoroughly enjoying life as a young adult all these years later.