12-year-old educating medical students about rare disease

Upcoming walk will raise awareness, research funds

DETROIT – Twelve-year-old Ian Crego is a percussionist in his school band. He's not afraid to march to the beat of his own drummer. Dealing with a rare disease can have that effect on a child.

"He really rose to the occasion. He's been so strong," said Julie Crego, Ian's mother. "I feel like it's made him stronger."

It was late 2016 when Julie first noticed something wasn't right.

"Ian's hair was lying kind of funny, and I thought he'd got a bad haircut, so I went and looked at his head and I noticed that he had a bald spot that was about the size of a nickel," said Julie.

A dermatologist diagnosed it as eczema. But it didn't get better. Then a bruise-like spot appeared on Ian's forehead.

"I was like, 'I don't know, I think I got punched or something,'" said Ian.

Their doctor wasn't overly concerned, but Julie was.

"To me, it was just too unusual, Being the type of person I am, you don't sit that. You get a second opinion," said Julie.

They found Dr. Tor Shwayder, head of pediatric dermatology at Henry Ford Hospital.

"He diagnosed him right away with linear scleroderma en coup de sabre," said Julie.

The word scleroderma comes from the Greek words for "hard and "skin."

"Scleroderma is a disease where the skin gets thick and tight and bound down," said Shwayder. "As it gets tight and as it forms a little dents, it hardens and affects the structures underneath."

"En coup de sabre" refers to a form of scleroderma on the forehead or scalp, so-called because of its resemblance to the scar of a saber wound.

Scleroderma is an autoimmune disease. It's rare in adults, and even more rare in children. Doctor's don't know what causes it, and there's no cure.

Early diagnosis and treatment is critical to prevent scleroderma from damaging the structures underneath the skin.

"Fortunately, Ian's case, we did catch it early," said Shwayder. "We gave him medicines that have seemed to slowed it and stopped it, and we're hoping that it will hold it in check."

One of Ian's treatments includes twice weekly phototherapy, in a special booth that looks similar to a tanning bed.

"The photons go into the skin. They tell the cells that are acting incorrectly to stop that and to normalize. It tells the inflammatory cells to go away," explained Shwayder.

Ian hears lots of questions about his disease.

"With the scarring, kids will ask questions a lot and he has had a couple of instances where people were less than kind about it . But he's great, he responds, you know, 'It's a disease,'" said Julie.

Ian is also helping educate another group -- medical students at Wayne State University.

"He talked to eight different groups of 20 to 30 second year medical students and did a really good job telling his story," said Julie.

"I was a little nervous to be honest," said Ian.

After his presentation, the students asked him questions.

"They asked if it hurt. One guy asked if like it stopped me from doing things," said Ian.

For the record, it doesn't hurt, and the only real limitation is needing to protect himself from the sun.

Ian's attitude and strength have been noticed by others. He received a "courage award" from the Troy Youth Assistance Program.

"He received a nomination and actually won an award because of his courage in handling challenges but continuing to be a positive influence and role model in the school. That was really great because he's had a hard year and to see him walking away from that being a stronger individual and others recognizing it was really meaningful," said Julie.

Ian and his family will be walking in this year's "Stampede Scleroderma" walk to raise awareness and money for research. Last year's walk was encouraging to Ian.

"Basically a giant parade of people with my disease, and I'm like, 'This is amazing.' I did not know there were that many people. I thought it was like almost no one," remembered Ian.

He says it's important for everyone to learn more about scleroderma.

"So people find a cure for it and learn about it, so next time they come across someone with it, it will be easier to help them out and know what to do," said Ian.

To learn more about scleroderma, visit the Scleroderma Foundation Michigan Chapter website.

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