Though haemophilia is a rare disorder, for the few families it impacts, the condition can seem all- encompassing. It can feel frustrating for children with haemophilia when their parents are clearly overprotective. We can’t really blame parents for their concern, when we know typical childhood activities could have serious consequences. But is this degree of protection really the right thing for haemophiliac children? Rather than wrapping them in cotton wool, vetoing sport and discouraging adventure, shouldn’t we encourage children with haemophilia to live a normal life?
To find out more about what it’s like to grow up with haemophilia in the UK, Dr Gowda, a physician, and a recognised researcher in Haemophilia had a discussion with Luke J, a Little Bleeder Ambassador. The conversation was part of an international campaign designed to raise awareness on the quality of life of Haemophilia patients.
In his mid-twenties, Luke reflects on his childhood, his parents’ attitude to his condition, his quality of life and his thirst for travel. Today, we’ll cover everything from risk management to the haemophilia patient pathway experience, in Luke’s own words.
What was it like to grow up with haemophilia?
I was the first person identified with haemophilia in my family. The doctors didn’t understand why I wasn’t recovering from the usual childhood bumps and bruises like everyone else.
At the age of two, I had keyhole surgery before anyone realised that I had haemophilia. I needed the surgery to find out why I couldn’t walk properly. As you can imagine, the recovery process was extremely slow and the surgery just made the problem much worse! I don’t really remember it, but I know that I was hospitalised for months afterwards.
Fortunately, my parents didn’t let my haemophilia affect my childhood. They were, and still are, wonderfully adventurous. They never let me miss out on any of the usual childhood experiences. They had a very logical approach to risk management that has stayed with me to this day.
As a young adult, how does your haemophilia affect on on a day-by-day basis?
I take Factor VIII when I have a bleed and it is extremely effective. My most serious bleeds have occurred when I didn’t take Factor VIII quickly enough — sometimes I would have such a minor bleed that it was unnoticeable to me, I’d go to bed that night then wake up unable to walk the next morning!
How much have you struggled with haemophilia in the past?
I once had a bad ankle injury that kept re-bleeding that had me not walking or on crutches for the best part of three months, and at the time I worried that I might never recover fully. And I can still feel the occasional twinge now, but I’m still able to walk and cycle perfectly well, so I consider myself lucky!
It’s not all been easy. My haemophilia did affect my studies at University — I had a severe bleed right before my finals and was on a lot of painkillers, which really affected my ability to think clearly.
As someone with haemophilia, what is your attitude towards sport and exercise?
I’ve given up aggressive contact sports, which was reasonably tough as I used to play football with my friends. But I was injured too frequently and I was getting two or three bleeds a year. I made the decision to spare myself the hospital time and I don’t regret it.
I still do plenty of active things: yoga, cycling and bouldering are my go-to hobbies. I also travel around the world, which opens me up to a lot of different experiences. I don’t let haemophilia get in my way.
What would be your advice for parents of children with haemophilia?
I’d recommend parents foster a love for non-contact activities and adventures! It can be tempting to hide away from all physical activity, but there are plenty of gentle exercises, such as swimming and yoga, that are immensely rewarding.
Little Bleeders founder professional cyclist Alex Dowsett said “Luke’s story is not uncommon, the temptation to wrap kids in cotton wool is a natural one, but carefully planned physical activity is hugely important in managing the condition. I created Little Bleeders because I recognise that it’s crucial that young people get the right guidance and support from healthcare professionals so they can enjoy physical activity.”