When Warwick dad Ian West tackles his eighth half-marathon next Sunday (March 23) he’s not only hoping to improve his time but also spread more awareness about
This is National Haemophilia Awareness month although Ian is more interested in one particular off-shoot of the little understood bleeding condition - the one that affects his wife Sue.
Sue, now in her 40s, was still at Newburgh Primary School when she was diagnosed with the rare Von Willibrand Disease, which comes under the umbrella of haemophilia blood disorders.
She’s among 23,700 people across the UK who have some form of bleeding disorder which stops the blood from clotting.
But it is unlikely any of them would actually bleed to death if left unattended.
The Von Willibrand type is widely under-diagnosed, carried by both men and women and there is a 50-50 chance that it is passed on to children.
Sue was lucky. Her own son Alfie did not inherit the condition. Although there was a worrying period of pregnancy when both she and Ian felt they were risking a form of Russian Roulette as they waited to find out.
Alfie, now a fit 11-year-old, has already started to play a key role in his father’s latest half-marathon.
Every day at the moment he is running a mile along Warwick Racecourse to clock up the best speed times he can. After 13 different runs, Alfie will add the times together and offer a cheeky new target for 44-year-old his father to beat in one go.
Ian’s best time to date is 89 minutes.
Sue, who works as a mental health nurse, inherited the condition from her own Dad, David Cooke, who lives in Warwick and contracted it from his mother.
Mr Cooke was completely unaware that he even suffered with Von Willibrands until he had to go into hospital for an operation.
“That’s how most people first become diagnosed with the condition,” explained Sue.
“My Dad didn’t know his blood didn’t clot well until he was on the operating table. After the doctors realised tests were carried out on my brother and I - that’s how we found out we’d inherited it.
“I’ve managed quite well for most of my life apart from haemorrhaging badly soon after giving birth. I’d never go out paint-balling or skydiving and didn’t do too much hard sport when I moved from Newburgh to Aylesford School.”
Ian said: “The two haemophilia nurses at University Hospital in Coventry not only help Sue but the 300 in this area known to have blood clotting disorders.
“They work incredibly hard and there is very little funding to help make life and treatment easier for both adults and children in this area.”
The Haemophilia Society needs to raise £600,000 a year to provide specialist nurses as well as family information days and weekends for newly-diagnosed children.
To sponsor Ian visit www.justgiving.co.uk/westy2014