Eden Quine- Taylor
Cutis Marmorata Telangiectatica Congenita (CMTC)
England

From the moment she was born, Eden’s skin told a story. Marked by unique patterns and color changes that shift with the weather, Eden lives with a rare vascular condition known as Cutis Marmorata Telangiectatica Congenita (CMTC). It’s a condition few people know about and even fewer understand.

“I have these marks on my arms, legs, chest they change color depending on the temperature," Eden says. “If it’s cold, they can get quite painful, because the blood vessels are closer to the surface. But apart from that, CMTC doesn’t physically hinder me. I’ve never received medical treatment for it.”

Growing up in England, Eden’s early years were filled with uncertainty for her family. “My parents spent a long time trying to figure out what was wrong with me. They couldn’t find a specialist who recognized the condition. It wasn’t until I was a toddler that we finally met someone in the Netherlands who gave us a proper diagnosis.”

But even in the face of unknowns, Eden’s parents made a conscious decision to approach her condition with positivity and love.

“They used to call my marks ‘angel’s kisses,’” Eden recalls with a smile. “They helped me see myself in a unique and powerful way. I used to tell my friends I could predict the weather because my skin would change color.”

That perspective gave Eden something many children struggle to find confidence in who she was.

Still, there were challenges. Curious children sometimes asked if she had been burned. Some hesitated to sit next to her or hold her hand. “Those moments stayed with me. You start to wonder, is there something wrong with me?” Eden says. “But the love I had around me reminded me that their curiosity wasn’t my fault. I just had to be patient and help people understand.”

One source of support that became deeply meaningful to Eden and her family was CMTC-OVM, a global organization supporting people living with vascular malformations. “They didn’t just support me, they supported my whole family. They helped us connect with others going through the same thing. That kind of community is so powerful when you live with a rare condition.”

Eden’s experience shaped not only her identity, but also her calling. “Having a rare condition made me deeply curious about other people’s personal experiences, what makes us different, how we cope, and how we grow. That’s how I found my passion for storytelling.”

Eden began making films at age 11 and quickly discovered that the camera gave her something she couldn’t find anywhere else: a way to share her truth and help others feel seen.

“Film allows you to live someone else’s life for a little while. That’s why I love it. I want to create stories that offer comfort, connection, understanding and especially for people who feel invisible or misunderstood.”

Now a film student in the UK, Eden is directing her graduation film, Paper Tiger. It tells the story of a young girl living in a society where medication is forced upon citizens to remove all visible differences. The protagonist, who has tiger-like markings on her arms, refuses to comply and fights to remain true to herself.

“It’s based on my own experience,” Eden says. “I feel I can tell this story authentically because I’ve lived it. It’s about resisting conformity and embracing individuality.”

The film, which is set to premiere at the British Film Institute (BFI) in London next summer, is being sponsored by CMTC-OVM, making it not only a personal statement but a platform for awareness. “I want Paper Tiger to shine a light on rare conditions like CMTC and the people living with them. Awareness matters. Representation matters.”

Through her art, Eden has found both healing and purpose. “Everyone expresses themselves differently. Some people turn to sports or academics. For me, it was film. It gave me a way to turn something personal into something powerful.”

Today, Eden stands in a place of peace and pride. “I’m at a point in my life where I feel completely happy with who I am. Being different isn’t something to fix, it’s something to honour.”

Courtesy of CMTC-OVM