David Abbott, Professor of Social Policy, School for Policy Studies
How long are we ‘supposed’ to live for? ‘Three score and ten’ was a phrase I used to hear growing up (70 in new money). Our cultural ideas about life course and life span and who should die when are deeply ingrained. Parents should never bury their children, right? But what if you are born with or develop a condition which means that from a relatively young age your life span is destined to be much shorter than the norm and that without a dramatic medical breakthrough, very little will change that.
Boys (and it’s nearly always boys) diagnosed with Duchenne muscular dystrophy are one such group. Duchenne (or DMD) is an inherited neuromuscular disease and the average age of death used to be 19 but during the last few years, with significant improvements in the ways DMD is managed, has risen to around 27 years. There is currently no cure for DMD.