It’s common to have psoriasis diagnosed as something else. Eczema, for instance. It’s less common for a doctor to look at your 7-year-old son’s body and say “bed bugs.”
This was an experience Jessica Houston and her son, Patrick, had in January 2016 in the aftermath of Patrick’s bout with strep throat and pneumonia. What started as spots on his chest had turned into thick plaques and blood on his scalp by the time his parents took him to a pediatric dermatologist in July 2016. “We don’t have psoriasis in our families,” Jessica says. “It seemed to appear out of the blue, and we were just feeling our way along.”
The doctor diagnosed Patrick with plaque psoriasis and put him on what Jessica calls “a hefty dose” of a systemic. (Systemic medications are prescription drugs that work throughout the body.) This improved his psoriasis – slowly. He still had spots on his face and on his genitals.
Overcoming geographic isolation
The Houstons didn’t know anyone in their hometown of Knoxville who had kids with psoriasis. They knew a few older people with psoriasis. They felt isolated. “I’m a mom, I’m in Tennessee, I’m not getting anywhere,” Jessica says.
After Patrick’s diagnosis, she went online and found the National Psoriasis Foundation. She joined the Psoriasis One to One program, which connected her with a mother in New Jersey, an experienced volunteer named Michel Tarabocchia whose daughter has psoriasis.
Tarabocchia told Jessica about NPF’s National Volunteer Conference planned for Chicago that August. They attended and were both thrilled by the conference. “For the first time, Patrick got to meet other kids with psoriasis. It helped his confidence a lot,” Jessica says. “He loved the pool at the hotel. It was a real breakthrough for him because for the first time he could go swimming with other kids with psoriasis without wearing a T-shirt.”
At the conference, Jessica learned about other treatments, including biologics, which the family’s health insurer was originally reluctant to pay for. Jessica, with the help of her local pharmacy, was able to overcome this obstacle, too, and Patrick went on a biologic the following month.
“To look at him, most people wouldn’t know he has psoriasis,” she says. Patrick has some spots due to the Koebner phenomenon, when psoriatic plaques form on healthy skin near the site of an injury. The systemic he was on in 2016 never cleared those up; the biologic cleared them in six weeks.
Patrick’s condition went from severe to mild. Jessica reports that he no longer flares whenever he’s sick, not even last Christmas, when he had the flu.
Patrick, now age 9, is also having a better experience with children at school. “Kids are curious, not malicious,” Jessica says. “They ask questions. They want to know.”
At one point, she asked Patrick if he would like her to speak with someone at school. But he said, “No, Mom, because we already explained it, plus we put that book in the library.” That book, Bernie’s Secret, published by NPF, is available as a free PDF.
Today, Jessica wants to meet other adults who have children with psoriasis in the Knoxville area. She hopes to start a support group and put on events. When Patrick’s spots appeared, she felt lost. She doesn’t want other parents to live in isolation as they did.
It takes a village
Does your child have psoriasis or psoriatic arthritis? The Patient Navigation Center can answer your questions and help you find solutions so your kid can live his or her healthiest life. You can also explore Our Spot for tools and resources designed for children, teens and families affected by psoriatic disease.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.