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Vancouver 12-year-old Battling Scleroderma

Girl's Disease Prompts Her Mom to Push for Research, Cure

Lillianne Grahek, Spring 2015 Voice

By Marissa Harshman, health reporter
Reprinted with permission of "The Columbian," Nov. 17, 2014
Photos reprinted courtesy of Natalie Behring

Lilliane Grahek was just 2 years old when the first blotch appeared. The spot on her stomach looked like a bruise, her fair skin turning a darker shade. The spot didn’t go away quickly, and then Lilliane’s mom, Kerin Clark Severson, noticed another spot forming.

Clark Severson took Lilliane to her pediatrician, who determined the spots weren’t bruises but couldn’t explain them. After a few more visits for new spots appearing in the following six months, the pediatrician referred Lilliane to a dermatologist at Doernbecher Children’s Hospital in Portland, Oregon. “He knew right away,” Clark Severson said.

Two-year-old Lilliane was diagnosed with scleroderma, a rare disease that involves the hardening and tightening of the skin and connective tissues.

Typically, scleroderma runs its course in three to five years, Clark Severson said. Lilliane, now 12, wasn’t so lucky. “Unfortunately, it’s been 10 years, and hers is still active,” Clark Severson said.

In those 10 years, Lilliane has developed numerous patches of tight darkened skin all over her left arm and leg, stomach and back. And, because Lilliane’s scleroderma is active deep within her muscles, she’s also experiences physical problems as her body grows. Her left legs is smaller in circumference and length than her right leg. The left side of her bottom also has a flattened appearance, the result of a lack of tissue and muscle on that side. “Because she’s still growing, it’s pretty much strangled the muscles from expanding,” Clark Severson said.

This article originally appeared in the Spring 2015 issue of "Scleroderma Voice." Become a Scleroderma Foundation member today to receive four issues per year.

 

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