Man with rare fragile skin condition breaks out in blisters at slightest touch
A man suffering from one of the rarest skin conditions will break out in blisters at the slightest touch.
Victor Hugo Quiroz, 28, was diagnosed with Recessive Dystrophic Epidermolysis Bulosa (EB) at birth and has since explained the impact it has on his life. The 28-year-old's quality of life has been hugely affected by the disorder, which means any friction to his skin can cause painful blisters, infections and cuts. He has since opened up on his diagnosis, which leaves him with webbed feet and constant blisters he is frequently having to pop.
He said: "It impacts my life on a daily basis, and although I live as normally as I can, there is not a day where I don’t have to care for my EB in some way. Changing a bandage on my body, popping a blister or doing everyday things that my EB just makes it a bit more difficult, such as opening a bottle of water. Sometimes it’s things that most people take for granted such as walking or eating. It is a constant every day battle that I have no choice but to deal with."
Victor was adamant his diagnosis would not 'control' his life (Jam Press/@vuzerk)Even with the difficulties of EB, Victor - who is from Texas, US - is determined to live his life as normally as possible. His childhood was a source of fun where his parents let him "test my limits with my body." He added: "I always credit my mum who wasn’t scared to let me be a kid. It really allowed me to learn how to be independent and learn what I could and couldn’t do. I have fond memories of me playing soccer every day after school in the streets until I literally couldn’t kick the ball because of how badly my feet were blistered, and although it sounds like a bad thing – that was me enjoying life and not letting EB control my life."
Doctors did not have much hope of Victor surviving more than a few weeks after birth (Jam Press/@vuzerk)EB affects one in 50,000 people, with Victor describing the condition as "overwhelming and exhausting" to deal with. He said: "Seeing your body constantly change and go through rough patches where everything just seems like too much. It’s hard to see a light at the end of the tunnel, it's a feeling I know all too well. Thankfully though I know my body well enough to know that these feelings are only temporary. But at times it can be the most difficult feeling to go through." He credits the condition, however, with making him mature at a much younger age.
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He has since travelled across the world alone, visiting the likes of Croatia and other parts of the United States. "I'm most proud of my independence, from traveling across the world by myself to going on trips completely on my own with no help from anyone," he said. There is no cure for EB at present and the life expectancy for the condition from infancy is just 30-years-old.
No cure is currently available for Victor's condition (Jam Press/@vuzerk)Victor said: "All we can do is care for our bodies to the best of our ability by changing the bandages daily, applying ointment and seeing our doctors as often as possible to assure that our bodies are stable.
"There are treatments out there, some that have even been approved but no real cure has been found. I, like many others with EB, was told at birth I only had a few weeks to live and yet here I am at 28 years old with so many accomplishments, so many things to be proud of. I’ve managed to make my passion a career, I’ve spoken in front of crowds, I’ve entertained thousands online and if I can do it I know everyone else can too."
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