Haematologists promote ‘inclusion over exclusion’ for children
Haematology Having a bleeding disorder no longer means children will be consigned to watching from the sidelines. Instead, exercise is helping to build physical strength and self-esteem as treatment promotes further inclusion.
Better treatment making exercise possible
Physical activity is important for us all, regardless of whether we have a bleeding disorder or not. For children living with haemophilia as recently as the 1980s, engaging in sport might have left them with damaging bleeds into the joints and muscles.
Thanks to significant advances in treatment, children with haemophilia can now engage in sport and exercise, improving both their physical strength and self-confidence.
For parents of children with haemophilia or other bleeding disorders, the desire to protect their child from harm can see them shielded from physical activity in early life.
Parents need to ‘let go of the handle’
Dan Hart, Consultant Haematologist at The Royal London Hospital, says he understands the difficulties parents of children with bleeding disorders face.
“About four years ago, I was teaching my son to ride a bike. At some stage you have to remove the safety net, take your hands of the handlebars and let them go,” he said.
“Would I be letting go so readily if my son had haemophilia? Perhaps not, but we have to help parents and children build up confidence in how positive physical activity can be.”
Swimming and cycling build strength
According to Hart, learning how to swim and ride a bike at a young age can be safer in the long run.
He argues that both swimming and cycling are life skills, and it’s easier for children to learn at the same time as their friends rather than when they’re older.
“As long as we encourage wearing a helmet, cycling is a fantastic way to keep children with bleeding disorders active. Otherwise, they can feel isolated from their friends.”
One boy sticks out as an example of why having a bleeding disorder doesn’t mean you can’t achieve extraordinary things.
Role models helping others move more
Extraordinary for some may mean simply being able to join in with a friend’s game of football, but Alex Dowsett’s story shows that children with bleeding disorders can still reach the pinnacle of a sport.
Professional cyclist Alex Dowsett is defying the stereotype attached to life with a bleeding disorder.
Alex was diagnosed with haemophilia at 18 months, when a bleed in his mouth didn’t stop. That day, a long journey of learning how to manage the disorder began.
Alex learned to inject the clotting factor which allows him to participate in sport in to his arm by the age of nine. He’s now a professional cyclist, riding his first Giro d’Italia in 2012 and is the Chairman of his own charity Little Bleeders which supports young people with haemophilia.
Little Bleeders' message to children living with bleeding disorders is “move more, be more’ and that they should have the confidence to pursue their sporting aspirations. For parents, managing a child’s expectations is key.
Set achievable goals
“Not every child will achieve what Alex has achieved, but our goal has to be minimalising marginalisation of children with bleeding disorders. The goal is inclusion, not exclusion,” Hart told me.
Hart spoke of how, as a clinician, he often only sees patients in hospital rooms or on the ward. Being involved in the Little Bleeders National Photography Competition for children with haemophilia last year, Hart saw how children living with bleeding disorders can be role models for each other.
“There were these wonderful pictures of the children - who have haemophilia - doing gymnastics or playing cricket. Seeing them doing their favourite activity was incredibly powerful.”
Brian Colvin, former Director of the Haemophilia Centre at the Royal London Hospital, echoes the view that empowering children with bleeding disorders to join in is essential.
“There has to be a commitment from the parents that their child can lead a nearly normal life,” he said.
“Some sports like Rugby will be out of the question, but parents can confidently encourage their child to swim or cycle. Not every child can be an elite athlete, but that’s the true for all of us.”
Strength building mental confidence
Colvin also pointed to both the physical and mental benefits of helping children with bleeding disorders move more.
“If you have better control of the body’s moving parts, you’re more confident that you’re not going to have that accident that could lead to a bleed,” he said.
Bleeding disorders shouldn’t stop children from enjoying their early life and being active. Managing their treatment and expectations allows them to flourish and take build self-esteem through being involved.