Believe, educate, advocate – A #ThisWay Story

In the framework of our #ThisWay campaign, the EHC interviewed Ross Bennett (25) from the United Kingdom, a patient with severe haemophilia B. Ross shared with us not only his struggles around sports but also how he overcame them, how he managed to stay physically active, despite all the injuries and bleeds he suffered throughout the years, and plenty of actionable steps you as a patient can take to improve your physical health.

Ross Bennett (25), United Kingdom

I was diagnosed with severe haemophilia B when I was 3.5 years old after I cut my tongue on a Coke can. It bled for a week, so my dad took me to the hospital, so I was diagnosed late, even though for years I had smaller bleeds and was constantly covered in bruises.

When I was 8, I had a major bleed in my right thigh and I spent 4 weeks in the hospital, and it took me 12 weeks to learn to walk again. It was also at that age I started prophylaxis, which wasn’t widespread in the UK back then, and got serious with sports afterward, even though I had a lot of right thigh bleeds from 8 to 21 years old and right shoulder bleed at least 30-40 times, and other big injuries such as twisting ankles.

Despite my medical condition, I was active from the day I learned to walk. My parents would take my sister and I swimming at a very young age, and at age 7, I went to boarding school, and started doing sports daily: I played football, field hockey, and cricket, and I would run and cycle. In university, I played baseball at a high level.

Back in 2006-2007, there wasn’t much scientific research on prophylaxis. It took me trial and error, and a lot of self-experimentation, to figure out what my body could or could not do. By age 13-14 I developed a better understanding of how to use treatment around sports. Luckily, we now have more evidence to back up what I intuitively started doing at an early age.

Here are the most important lessons I have learned:

• Injuries happen, it doesn’t matter if you’re haemophiliac or not. You are going to pull muscles, you’re going to have bleeds, you’re going to make mistakes and you just have to accept that if you want to be physically active. Of course, it is always scarier to twist your ankle when you’re haemophiliac but trial and error is going to enable you to figure out a regime that works specifically for you.
• Recovery is important. The mistake I made when I was younger is that I always wanted to rush back to training. Take your time, use the help of physiotherapists, use K-tape which is cheap and readily available to everyone, and apply recovery techniques. Use ice after training sessions, ice baths, or just a really cold bath or shower in the summer for recovery. These are all non-invasive therapies that are not dangerous to anyone.
• You can do sports purely for enjoyment. Don’t expect to do everything at 100% at first, just break your way into the sport, take your time, figure out what you like to do, and accept that certain sports you might not be able to do your whole life. For instance, if you want to get into cycling you don’t have to buy an expensive bike – just get started with any bike.
• There are many sports you can do until you’re in your 70-80s such as cricket, hockey, golf, tennis, swimming, running or walking, and cycling. It is going to change from country to country, and of course, it depends on the climate what you can or cannot do but there are options out there, so use the information available about what sports are popular in your country to get started.
• I find the benefit of cross-training brilliant which is doing a multitude of sports. For instance, I like to switch up running with cycling and swimming to take off the pressure from my knees and ankles, rather than just doing one sport for 7 days a week. I’ve actually never had a joint bleed which is probably because I used to do strength training, running, and swimming.
• Don’t forget to warm up properly and eat a healthy, balanced diet. The most important thing is not eating processed food, just having a proper, cooked meal instead to keep you strong. Also, make sure you drink enough water which is good not only for sports but for anyone with haemophilia: if you find doing your injections hard it’s probably because you don’t drink enough water – your veins are bigger and easier to find when you’re warm and well-hydrated.

As for the future, I will keep cycling and running, and focusing on recovering from a few nagging injuries (not haemophilia related). In the summer of 2023, I’ll do the so-called Three Peaks Challenge which is climbing the three highest peaks of Scotland, England, and Wales within 24 hours, which we will document and share with the community.