A haemophilia patient from Greenwich has had his life changed after taking part in a ground-breaking gene therapy clinical trial.
Luke Pembroke, 28, grew up with severe haemophilia, a rare blood-clotting disorder, and had to be injected three times a week since the age of one to keep his bleeding at bay – even learning how to inject himself from eight years old.
However, since having the revolutionary gene therapy treatment in February 2020 he has not had to inject a single dose and his haemophilia is now classed as mild.
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Luke said: “I feel liberated from my haemophilia.
“The physical benefits are clear, but a massive mental burden has also been lifted.
“I can go out with my mates now or go to the gym and I don’t have to worry.
“Technically, I’m not cured but I don’t have to manage my haemophilia on a daily basis now, so it doesn’t even cross my mind anymore.
“I’ve finally got to experience what it’s like to live in the world without severe haemophilia.”
As a child, Luke’s haemophilia meant constant days off school as he battled a lot of internal bleeds in his muscles and joints.
He told the News Shopper that he would often spend those days watching David Attenborough documentaries and dreaming of visiting the Amazon rainforest.
This year, his dreams came true as Luke was able to take part in an internship for seven weeks in the Peruvian Amazon with conservation charity Fauna Forever.
Luke said: “I always said I wouldn’t let my haemophilia hold me back from travelling, but you just can’t be as spontaneous.
“You need to lug around a second bag with needles, get them through airport security, find your nearest haemophilia centre, and worry about bleeds.
“You might be on holiday, but the haemophilia doesn’t take a day off.
“This trip, I didn’t have to worry about any of it – I was hiking and climbing and when I got knocks or bruises, they just got better on their own which I’ve never been used to.
“I finally felt like a ‘normal’ person – whatever normal means.”
Despite the painful journey through his clinical trial, gene therapy has allowed Luke to experience things he never thought would be possible and he ultimately hopes that these effects will last throughout his lifetime.
Now, Luke is hoping that gene therapy can be offered to everyone suffering with the genetic disease around the world.
He added: “I feel like I’ve done something big for the whole community, not just for me.
“We’re lucky in the UK to have access to these revolutionary trials, and to have the NHS help with haemophilia treatment in general.
“People tell me I’m so brave to put myself forward for this trial, but I just see myself as so privileged and lucky to have had the opportunity to do it.
“75 per cent of people with haemophilia around the world don’t have access to treatment so whilst we can celebrate this amazing development in gene therapy, it needs to be available to everyone.”
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