To slide into a pair of blue jeans is a milestone for Alina Vue.
The 16 year old from Akron has suffered most of her life from a severe form of psoriasis that covered her from head to toe with painful, blister-like patches. The autoimmune disease causes overproduction of skin cells and also caused her joints to swell and ache.
The condition has been debilitating, preventing her from doing every-day activities like going to school, leaving Alina house-bound and robbing her of sleep. She wore her clothing loose to protect irritated skin and her hair cropped short to keep the pulsing hot bumps on her scalp as cool as possible.
“It hurt a lot, especially with it being all over my body,” said Alina, who tells her story with sober clarity. “I used to say it was kind of like your skin is inside out. I felt sometimes like I was on fire.”
Her disease, called pustular psoriasis, is rare in children and is difficult to treat. Over the years, Alina had seen many doctors and took many medications, some of which are designated for adults and aren’t proven for children. Treatments sometimes worked but their effectiveness didn’t last.
After Alina’s family moved from Tampa, Florida, to Akron last year, they were referred to Dr. Nicholas Nguyen, director of dermatology at Akron Children’s Hospital.
“When I first met Alina, she was very reserved, very timid,” Dr. Nguyen said. “She kept her head down. You could tell her skin had a lot to do with that.”
Dr. Nguyen said it’s not clear what causes the disease. “There’s probably a genetic predisposition and an environmental trigger. We don’t know what that is. It could be something like a cold sets it off.”
He started Alina on ustekinumab, a biologic medication injected every 3 months. The drug, approved for psoriasis treatment in 2009, blocks faulty signals responsible for inflammation in psoriasis.
A few weeks after the first injection in October, Alina’s psoriasis had significantly cleared. Today, after years of failed treatments, the medication has kept the disease in remission, including her joint inflammation (a condition called psoriatic arthritis).
“It was tough for her to do anything at all,” said Alina’s father, Tou. “Her joints swelled up real bad.”
The medication has changed her life.
“Not only did her skin transform, but also her personality,” Dr. Nguyen said. “She became much more confident, much more social.
“That’s why we do this, for the psychosocial piece. This has been a long road for them. For her entire life, she’s been dealing with this.”
The turnaround brought Alina’s mother, Mae, to tears. She recalled the time recently her daughter was able to bend her knees to reach a store item on a lower shelf.
“She said, ‘Mom, I can do this!’” said Mae.
“It’s been very good so far,” Mae said. “We haven’t noticed any significant side effects from the medication. She is able to do things she wasn’t able to do before, like going shopping, going out with kids her age.”
Alina, who takes online high school classes, said she’s learning for the first time how to be with other teens.
“It’s given me a chance to know friends my age, to be a teenager,” she said. “It’s a part of me I never got to grow into.
“It’s only been 5 months, but so much has changed.”