Jodi's Story

Categories: Living with CMN, Raising Awareness about CMN

By Patricia McAdams, Staff Writer, Nevus Outreach

Jodi Unsworth stands next to her mother Val

Jodi Unsworth and her mother Val at the
2012 Nevus Outreach Conference in Texas

Roughly 20 years after the Beatles left Liverpool England for America, a little girl was born in that same town named Jodi Unsworth. She, too, would one day rise to stardom among many for her compassion for others and her dedication to making a difference in their lives. But first, this little girl had to grow up. And growing up was hard to do.

A blessing in disguise

When Jodi Unsworth was born 31 years ago with a large brown nevus with open wounds covering more than 80 percent of her body, it was like the dark ages. With no Internet as yet and no streamlined mechanism for sharing medical information, her doctors had no idea of a diagnosis or how to care for this child.

“My doctors said they had never seen anyone with this condition,” says Unsworth. “They thought I would live maybe a few years. They wrapped me up and sent me home with mum and dad and a bag of bandages. We lived in a little village, where everyone knew everyone else. Mum would push my stroller down the street and our neighbors would cross over to the other side, because they didn’t know what to say. We were so isolated.”

Not knowing whether her birthmark was life threatening, but suspecting that it was, her doctors felt compelled to remove it, though they didn’t know quite how to do that. Unsworth endured more than 30 surgeries — including dermabrasion, grafting, and excisions. Not only was her childhood consumed with surgery and suffering, but she fell behind in school, and remembers doctors gawking at her when she went in for her checkups every six months or so.

“I would be pushed into a room with about 30 doctors, because I was such a ‘strange person,’ says Unsworth. “They would look and some of them would push my nevi a little bit.” With her sunny personality amazingly still intact, Unsworth can laugh about it now, she says, adding, “Not in a million years would any of them thought I would be standing up here, talking to you today.”

Milestone on a Cornwall beach

But suffering can change a person deep within the shadows of their soul where, sometimes, wisdom is born, even in childhood. For Unsworth, her family’s first holiday on a beach in Cornwall, when she was 10 was a bit of a turning point in her life.

She and her little sister, Amy, then 7, had a hankering to wear a bikini for the first time ever, she says. With encouragement from her parents, they did. “And as I walked down into this very busy beach toward the water, I could feel everyone staring from every angle. ‘Mummy, what’s that?’ I heard one little girl say, pointing to me. It was very isolating not even knowing the name of what you’ve got. But then I thought of my mum and dad loving who I am, and that was the first time I accepted myself. I decided that from that day forward, I would try not to be effected by the thoughts of others.”

Knock on the door

Then one night, about five years later, a curious thing happened. A friend knocked on their door with a newspaper from Scotland that she had received in the mail. Why their friend, who also lives in Liverpool, received that Scottish newspaper remains a mystery to this day. But the paper told the story of a little baby boy born with a birthmark covering much of his little body. His parents had found a dermatologist — David Atherton, MD, from the Great Ormond Street Hospital (GOSH) for Children in London — who knew what it was.

“We went to visit him and it was like a miracle. Dr. Atherton told me the name of what I had — a large congenital melanocytic nevus (LCMN) — and told me I was not alone. He asked if we would support other families affected by a nevus and we said yes, straight away.” Knowing she was not alone changed everything and things happened quickly after that. By the next year, Unsworth and Atherton arranged for the families of all children with LCMN in the UK to meet for the first time. Soon afterwards, Unsworth founded Caring Matters Now. Like Nevus Outreach, the group’s mission is to support families affected by a nevus, to raise awareness across the medical field, and to raise money for research.

If only her teachers could see her now

While Unsworth was busy organizing Caring Matters Now, supporting families, and putting up with peer pressure, bullying, and other challenges of being a teenager, she was frantically trying to catch up with her schoolwork. Barely scraping by with Cs after losing three full years of school, she was surprised to find herself as a finalist for the National Student of the Year Award in the UK when she was 18.

Unsworth regaled the Conference audience with the story of how embarrassed she was during the awards ceremony surrounded by many hundreds of people, her competition all incredibly brainy straight A students from around the country. But then they called her name!

“I was just a typical girl from Liverpool, but I won the National Student of the Year Award in 1999,” says Unsworth, stunned by this turn of events. “This was a passport into any University in England.

“I feel so blessed to have this condition,” says Unsworth. “The person I am today is not in spite of my CMN, it’s because of my CMN.

After the university

“The proudest moment of my dad’s life, I think, was when I was on the management board for the Liverpool Football Club after the university, looking after those with disabilities,” she says, laughing. “Part of my job was to go into special needs schools and make sure all the boys and girls could play as well.”

Since then, Unsworth has been a globe trotting coordinator of a relief project called Buckets of Love for a Christian aid-relief charity. Most recently, she has accepted the position as executive director of Caring Matters Now. Her job will be to travel around the country, and beyond, giving speeches, and raising awareness and funds for research for LCMN. These funds will go to Veronica Kinsler, MD, at GOSH, who has taken over for Atherton after his retirement. “Without her, our support group wouldn’t be where it is today,” Unsworth says.

In closing, Unsworth shared something the pastor of her church once said to her. “‘You can choose to be a bitter person or a better person,’ he said. And at that moment, I thought I want to be a better person.

“I have been given a heart of compassion for anyone who suffers, so they don’t feel as isolated as I did.

“If you are sitting here now, please don’t see your nevi as something bad. Use it as something good. Use it to your advantage. Don’t be a bitter person. Be a better person. Grasp every opportunity you have. This week can be a magical time for you guys. I’m sure you will get so much out of it.”

Read more of Jodi’s story on the Caring Matters Now

The Great Ormond Street Hospital for Children was featured in the Opening Day Ceremonies of the 2012 Olympics in London during a segment dedicated to English literature. J.M. Barrie loved children and supported Great Ormond Street Hospital for many years. In 1929, he donated all his rights to Peter Pan to GOSH.

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