Although cystic fibrosis is rare, about one in twenty five of us unknowingly carries the faulty gene which causes cystic fibrosis, a condition which affects the lungs and the digestion. It was once invariably fatal in early childhood, but with better treatments, and new medications , people can now grow up, and, to the outside world, look well, lead near normal lives, studying, working, playing sport, and raising families .
It is only those close to them who know the sheer hard work of daily treatment throughout their lives. For example, patients must have physiotherapy at least 2 or 3 times a day. One local man, aged 46, has therefore had at least 33,580 sessions, lasting a half hour each, plus several other types of treatment.
Researchers, including those at the University of Portsmouth, are still discovering more about this very complex condition, nowadays diagnosed by a heel prick test soon after birth. There is real hope that a form of cure will be found. But help is still needed to do this.
Some of the local branch members recently wore yellow, for the CF Trust’s 3rd Wear Yellow Day, on 1st July. The Emirates Spinnaker Tower was lit yellow for the second year running, to mark the occasion. The branch , which has been active for over 50 years, is hoping that next year, 2017, others will join in the fun, and help the 10000 + people in the UK, and 200-300 people in Hampshire, to fight for a better future. For more information, please visit www.cysticfibrosis.org.uk, and for local events, www.facebook.com/CFPortsmouth.