Some of you will know my brother Chris (see pic with me and Mum) has special needs. He suffers from a rare genetic disorder called Prader-Willi syndrome (or PWS). You’re less likely to know that for the last few months I have been training to take part in the Great North Run on Sunday 16 September 2012.  As the day nears, I’m starting to appreciate exactly what I’ve let myself in for.

To mark this challenge I’ve set myself a sponsorship target for PWSA the charity that supports people with PWS and those that care for them.  PWS is a serious and complex genetic disorder that affects people throughout their lives.  The common characteristics of this condition include learning/behavioural difficulties, low muscle tone, short stature, an obsession with food and hunger which can lead to excessive eating and life threatening obesity. 

Chris has these characteristics.  In particular, he feels hungry all the time.  No matter how much he eats he can never feel satisfied.  He also has low muscle tone which means he burns less calories than the average person.  Not surprisingly, he struggles to maintain a healthy weight.  This is despite the fact that his diet and access to food is constantly monitored and restricted.  It’s a huge challenge for us - some people with PWS will steal  in order to get access to food to stave off their hunger and left alone would literally eat themselves to death.   It doesn’t help us that everywhere you go food is on sale or someone is eating.  Special occasions and social events also always tend to revolve around food which means people with PWS and their families can’t enjoy them in the same way everyone else can.

Chris has a big personality, he enjoys life and he tries really hard every day but sometimes he just can’t control his compulsion to eat or his behaviour in order to get access to food and he can get really down about this.  The problem is not yet fully understood but we know that the compulsion to eat is due to a flaw in the hypothalamus part of the brain, which normally registers feelings of hunger and satiety.  If a ‘cure’ for PWS can’t be found, I hope that one day  something could be done to alleviate this aspect of the condition which we find really tough as a family.

So please dig deep and sponsor me and hopefully your support will get me across the finish line without too much pain or injury!