What it’s like living with Haemophilia

‘If I were to cut you, would you bleed to death?’

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Haemophilia, a rare genetic disorder shrouded in mysterious royal glamour, is when the body is incapable of producing one or more plasma proteins required to clot blood. Famously, the Royal family trees of Europe have been plagued by Haemophilia, earning it the nickname: “The Royal Disease”. Three intravenous injections, on a normal week, give sufferers the sufficient amount of protein to get through the day safely.

Bertie Berger is a 24-year-old professional living in London who was born with Haemophilia A – the most common strand affecting 80% of sufferers. Haemophilia A refers to the inability to produce Factor VIII, a protein produced by the body to clot the blood and stem bleeding. In fact, Haemophiliacs produce less than one percent (you produce around 70-90%).

I spoke to Bertie about living with Haemophilia.

What is it like living with Haemophilia?

“Living with Haemophilia, people are always telling you what you can’t do and not what you can. People always seem to have a warped impression of the Royal Disease, carried by Queen Victoria and endured by Russian Tsars. It goes beyond that most common question,“If I cut you, will you bleed to death?””

Well – if I cut you, will you bleed to death?

“Contrary to popular belief, a simple cut is not going to kill us. For Haemophiliacs, the possibility of internal bleeding, especially into a joint, is the problem – this sort of bruise is known as a “bleed”. A bleed of this sort can become an area of weakness in the body and subject to further damage.”

Will you ever live a normal life?

“In order for us to play sport and to be as ‘normal’ (I hate that word) as possible, we have to inject Factor VIII intravenously three times a week. This provides us with additional levels of the protein and allows us to live a far more active life. Should a haemophiliac take a significant knock or a bleed they must take more Factor VIII to encourage the blood’s ability to clot.”

So, you can play sport?

“For obvious reasons, rugby is an absolute no-go due to the constant impact through tackling, and  we were also advised not to play cricket or hockey either, let alone enjoy a skiing holiday. We were always told that, if we wanted to participate in sport, swimming was our only viable option.”

Have you always followed this advice?

“Not by the book. Sport for a Haemophiliac is actually really important. Building muscle around the joints is essential in protecting them from bleeds. I have played sport since I was able to walk, and still do, though I think I am going to start play less now, as my joints are beginning to weaken as I get older. It won’t stop me refereeing rugby, playing cricket or running.”

Do you believe the advice is too strict?

“I have helped a few younger Haemophiliacs from time to time. I know that I have been very lucky with my health, and I believe this is down to the amount of sport I played when I was young. It meant that the muscles around my joints were strong from an early age, and bleeds were rare. It is important that youngsters diagnosed with Haemophilia know that they can work with the disorder.”

Will your children be Haemophiliacs?

“Because Haemophilia is carried in the X chromosome, and it is recessive, my sons will not have it and my daughters will carry it to their children. This is assuming my wife isn’t a carrier – if she is then that will fuck the entire system up – it would be bad news.”

Bertie works for a financial communications agency in London, having left Leeds University two years ago. He cycles to work most days and is currently training for the London marathon. He is running to raise money for the Haemophilia Society – and you can donate here.