Haemophilia is an inherited bleeding disorder that affects 6,000 people in the UK. People with haemophilia lack substances called clotting factors, so their blood does not clot properly. This can cause bleeding into the joints, muscles and organs.  

Bleeding into the joints can cause disabling arthritis, as Julia Spires, a specialist haemophilia nurse, explains. “Without treatment, children will often be in a lot of pain and have mobility problems. Once treatment starts it’s possible to have a normal life but we need them to be fit, healthy and active.”

Importance of exercise
There is no cure, but haemophilia can be managed with regular injections of clotting factor medication. And experts also recommend regular exercise — swimming, cycling  and resistance training with weights, as people who have strong muscles recover from injury more quickly. “For people with haemophilia, injuries can mean weeks off school or work, pain, and physiotherapy treatment. Good muscle tone protects joints and promotes better balance and coordination,” Spires explains.
Swimming is preferred as it as a non-weight bearing exercise. “Swimming is great because the water lifts the pressure off the joints Even if children have had a bleed they can use a full range of motion and make their joints more flexible and loosen the muscles.”
 

“Sometimes being prevented from doing what you want by a disease can become a slippery slope emotionally. Exercise and social activity can help”

Novo Nordisk partnered with an expert group of healthcare  professionals to set up the Buddy Award  Swimming Academy for boys aged 9 to 13 with haemophilia, and invited Team GB paralympic swimmer Jack Bridge — who has haemophilia — to coach the boys. The pilot event, which took place at the end of last year, was attended by 24 boys from around the UK. The plan now is to roll out the programme more widely making it available to people of all ages who have a bleeding disorder.

“It’s expensive to treat this illness. The programme came out of discussions about how to engage young boys and get them to swim for exercise for the next 20, 30 and 40 years,” says Dan Hart, consultant haematologist at Barts and The Royal London Hospital.

Social interaction key
Paul McLaughlin, a clinical specialist physiotherapist in haemophilia, who, along with Hart and Spires, is on the advisory group for the swimming academy, says the event was the first time many of the boys had met someone else their age with haemophilia. Socialising with other boys — and a paralympian — with haemophilia was inspirational.

“Boys that age can be difficult to engage with. Some may have established joint damage and weak
muscles and can feel body conscious as a result. Seeing Jack who has problems with his joints — his elbow doesn’t quite go straight — but who has trained to achieve a high level of physical fitness and is as efficient in the water as other athletes, was a great lesson for the kids. The magic of swimming is that it’s still useful even if the technique is a little off.”

Hart agrees: “Having an inspirational character there, with his recent achievements and sporting excellence was key. The boys definitely related to him.”

Sense of achievement
Spires says the club gave the boys a sense of achievement and their parents a sense of inclusion: “Sometimes being prevented from doing what you want by a disease can become a slippery slope emotionally. Exercise and social activity can help. It also gives parents the relief that their children can do normal things. It’s a really important extension of family life.”