A man who has one of the rarest skin conditions in the world reveals that his skin is so fragile it can rip from the slightest touch.
Victor Hugo Quiroz, 28, was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (EB) at birth, a genetic condition that affects his entire body and has left him with webbed hands and feet.
EB is the name for a group of rare inherited skin disorders that causes the skin to become very fragile, meaning any friction to the skin can cause painful blisters.
For Victor, the condition has had a huge effect on his quality of life.
“I’m often left with blisters, open wounds, infections and cuts,” the content creator, from Houston, Texas, US, told NeedToKnow.
“One of my other symptoms is that my hands and feet are webbed, as well as changes in the pigmentation of my skin.
“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.”
Growing up, Victor had a relatively normal childhood and didn’t let EB get in the way of him enjoying life with friends.
He said: “I always credit my mum who wasn’t scared to let me be a kid. Even though I would get hurt she allowed me to have fun and test my limits with my body.
“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.”
But the condition, which affects 1 in 50,000 people, has also had a more profound effect on his mental health.
Victor said: “By far the hardest obstacle with EB is my mental health, even though I preach and try my best to always be positive and uplifting I would be lying if I said I was that way 100% of the time.
“EB is not an easy condition to live with by any means.
“At times it can be extremely overwhelming and exhausting.
“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.”
But Victor insists he doesn’t let his condition limit him any more than strictly necessary.
He said: “It made me mature a lot younger, I’ve gone through so much since the moment I was born, and I am proud of myself.
“When I was a teen, I gave myself two choices: I could either live my life feeling sorry for myself and let EB define every aspect of me, or I could make the best of the life I have and live it to the fullest.
“In so many ways I feel blessed to have the life I have and genuinely feel like if I didn’t have EB I wouldn’t be the same positive, happy and appreciative person I am today.”
He has also succeeded in many parts of his life, including travelling across the world by himself, visiting Croatia, and states including Florida and California.
Victor said: “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.
“I can honestly say I’m proud of myself and I am grateful for everything I’m able to do despite my EB – it’s something I never take for granted.
“I’ve exceeded the expectations of many and I know that I will only continue to do amazing things.”
At the moment, there is no cure for EB, and the life expectancy is said to be from infancy to 30 years old.
Victor added: “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.
“Don’t let anything hold you back from reaching your goals, you never know what you might accomplish until you go for it.
“Anything is possible, I’ve always said this, and will continue to do so.”
READ MORE: Woman left with skin as ‘fragile as butterfly wings’ by condition that killed FOUR of her aunties
