Finding Sanctuary Away From Home

Categories: Living with CMN, Raising Awareness about CMN

By Patricia McAdams, Staff Writer, Nevus Outreach

Stamatiou Family

Maximo, George, Danielle, and Stella Stamatiou

The term, sanctuary, generally refers to a safe place — a place of refuge or rest. It is a holy place, where one can experience joy, be at peace, and come away renewed and inspired. The Nevus Outreach biennial conferences have been all of these things and more for nevus owner Danielle Stamatiou, 35, of Toronto, Canada.

Like many other adults with a nevus, Stamatiou never had a diagnosis for her birthmarks as a child. It wasn’t until she was 18, in 1995, recovering from the last of her 20 surgeries (grafting and dermabrasion) that she learned that she had a large congenital melanocytic nevus (LCMN). It wasn’t until she was 25, in 2002, that she sat down at the computer one day, just for fun, and Googled her birthmarks.

“I was in shock!” says Stamatiou. “I didn’t expect anything to come up, let alone a support group. I was happy to finally know I was not alone, but sad that it had taken so long to make this connection.”

Off to Ohio

Einstein once said, “Never lose a holy curiosity,” and it was curiosity that lured Stamatiou to attend the Nevus Outreach conference in Columbus in 2004. “It knocked my socks off,” she remembers.

“By 2004, I was in a serious relationship with my future husband George. I was in the middle of my PhD program in plant genetics. I had bought my first house. I thought I had myself pretty put together! I didn’t think about my birthmarks that often and I wasn’t sure what this conference could offer me — but I went anyhow.

“Well, what can I say? I was young and naïve. When I heard myself speak at the conference about my past experiences, I started to cry. It opened up so many buried emotions of how shy and insecure I had been as a child and the fear I had of surgery, which was so traumatic. But talking and sharing my experiences made me feel so good! It was liberating and I wasn’t even aware that I had needed to share these experiences.

“I have literally seen this group transform people’s lives. I have cried tears with young parents who shared their fears of their children fitting in. And I have laughed until my sides hurt at the humor nevus owners have found through all of this. I never get tired of hearing each and every story.”

On the Board

Before she knew what was happening, Stamatiou was asked to be on the Board of Directors to bring the perspective of an adult with a nevus with a strong science background as well. And then in 2012 she was asked to be Chair, where her passion has been focused on the scientific research that Nevus Outreach funds.

“For me personally, knowledge is power. That is why the collaboration between research scientists and the medical community is so critical. So much more can be accomplished when we work together.”

Back to Canada

Following the conference in 2004, Stamatiou returned to the University of Toronto, earned her PhD, then started working as a postdoctoral research scientist alongside George, another PhD scientist. Together, they researched the potential of plants as an alternate source of fuel and now have a patent pending. The couple married in 2007 and soon began a family. Maximo is now two and a half years old and Stella just turned one.

“Most parents think of giving their children ‘the talk’ as explaining the birds and the bees. Well, I have always planned on giving ‘the talk’ to my children explaining mommy’s birthmarks. I intended to begin my approach by showing them a birthmark on their own body (almost everybody has a least one) and then I would explain that I have the exact same birthmark as they do, only more, a lot more.

“So, of course, my kids don’t have any birthmarks — not one little ity bitty birthmark on either of them” she says. “They are always keeping me on my toes!”

Extended family reunion

Stamatiou is excited for the conference in Texas where maybe the best part is empowering kids in the breakout sessions and letting them ask any questions they want.

“You would be amazed at the connection you are able to make in only four days of the conference,” she says. She tells them, “Like yourself and be proud of who you are. Beauty is within. It is in the kind acts you do for your friends, the respect you show your parents, and the courage you have to face your fears. Don’t ever let anyone make you feel less than beautiful.”

The other best part of the conference, she says, is in reuniting with other adults with a nevus with whom she has developed a tight bond and lasting friendship and who are like family. “Having finally found one another, we are not going to let go.”

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