From Hiding to Shining - my journey with CMN and why we need each other

There are only seven people in the whole world with CMN. Take good care of her –

Photography by ©Arthur Baue

children like her don’t get older than two years."

That’s what doctors told my parents when I was born in 1976 in Germany with CMN – Congenital Melanocytic Nevi – covering large parts of my body. Imagine the fear they must have felt?

Growing up, I felt different. And yes, being different isn’t always easy – when people stare, whisper, or even bully you. For years, I tried to hide. I covered my skin, wore turtlenecks in summer, and thought: If I can’t see my moles, maybe others won’t either. Spoiler alert: that didn’t work.

But everything changed in 2019. When I accidently stumbled across the #HowDoYouCMeNow photo exhibition from “Caring Matters Now” – 30 beautiful portraits of people with CMN. For the first time in my life, I saw others like me. It was overwhelming – and healing.

I joined CMN UK, attended my first conference, and there, I met teens confidently wearing tank tops, proudly showing their skin. That moment flipped a switch inside me.

I realized:

The only voice that truly counts is my own.

I am enough. I am beautiful. Just the way I am.

But my journey didn’t stop there. Funny enough: I had to fly to England to meet Bennie, the vice chairman of the German network Nävus Netzwerk Deutschland e.V. at the CMN conference. Since 2022, I am part of their extended board, and I’m proud that we grow stronger and more visible each year.

Together with Nevus Outreach, Nävus Netzwerk and all other Organisations, we are building bridges between countries and hearts – because CMN doesn't stop at borders, and neither should our support.

So when I was asked to help create the 1st Global CMN Awareness Day in 2024, I said yes without hesitation. I knew: We need to be visible – for ourselves, for parents of newly diagnosed children, for the world.

Today, I’m proud to see more families joining every year. Because knowing you are not alone can change everything.

Just like for little Falko, a boy from Germany with a large facial nevus. His mom drove 4 hours to meet me so he could see someone like him. We talked and sang my song "Mutausbruch" ("Courage Breakthrough") together and he was too shy to look into my eyes. A year later, Falko proudly joined Rare Disease Day holding a sign: "I support. Strong! Proud! Many!" Seeing his confidence grow reminds me why visibility matters.

Today, I’m a singer-songwriter and professional speaker and coach, empowering people and teams to embrace diversity, show up fully, and believe: It’s never too late to start you’re your best life.

This year, I’m honored to open the Global Skin Conference in Prague with my keynote –standing tall with all my colours.

So here’s my message to you:

You are beautiful. You are strong. You are perfect just as you are.

Be unique. Be unstoppable. Be you. Go your way!

From the moment I started loving myself, with all my spots, scars, and colors, my light began to shine. Let's keep shining – together.

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