Psoriasis is challenging at any age, but I've often thought the disease must be especially trying when diagnosed as a child. The red, scaly patches are uncomfortable enough without having to try to explain it to teachers, classmates and friends. And if a child has psoriatic arthritis, there's the potential physical limitations that may occur, preventing the kind of participation a child may wish to have in certain sports and other activities.
As many as 7.5 million Americans have psoriasis, and of those people, up to 30 percent also develop psoriatic arthritis, which causes pain, stiffness and swelling in and around the joints.
Few studies exist on how many children have psoriatic arthritis, which can appear at any age but most commonly appears between the ages of 30 and 50.
Studies estimate that up to 15 percent of children who have juvenile arthritis also have psoriatic arthritis, says Dr. Marisa Klein-Gitelman, who heads the rheumatology division at Northwestern University in Chicago. And, Klein-Gitelman told me, about six of every 10,000 children have juvenile arthritis. The Arthritis Foundation describes juvenile arthritis as "any form of arthritis or arthritis-related condition that develops in children or teenagers who are less than 18 years of age."
A few years ago I had the opportunity to interview a boy who at the age of 5 was diagnosed with psoriatic arthritis after experiencing scalp psoriasis. I was impressed with how Andy Moy, now 13, and his family have taken a positive and proactive approach to his treatment. I recently checked in with his mom, Jaime Moy, of Waterford, Mich., to find out how Andy is doing and how their family continues to cope with these diseases.
For families who have just received a psoriasis or psoriatic arthritis diagnosis for one of their kids, what advice would you offer to them as far as first steps they should take?
Jaime: The first place we went is to the National Psoriasis Foundation and the Arthritis Foundation websites. Both were really great at explaining what juvenile psoriatic arthritis is and what to expect with the disease. Both sites now offer kids micro sites that are great for the kids to read about the diseases and connect with other kids who are going through the same things.
We also joined online groups related to juvenile PsA and that was helpful to bounce ideas off of other parents. I would caution, though, to stay with well-known sites like NPF and AF because there are a lot of horror stories out there and so-called quick fixes to cure the disease that really scare you and make you invest money for medications that don't work.
What have you found is the most challenging thing(s) about your child having this disease? Any silver linings?
Jaime: For Andy, the most frustrating part is when he gets sick, especially strep throat. He could be completely clear of psoriasis and his arthritis could be doing well, but when he gets sick, the disease flares and then we have to spend months getting him back on track. The silver lining is that he does have good days when he can spend the whole day at the zoo without a wheelchair. It's not all gloom and doom. And great advances are being made in medication and research. We are hopeful that there will be cure -- if not in Andy's lifetime, then for the next generation.
What has helped you, as a mom, cope? What has helped Andy the most?
Jaime: Our family has attended parent seminars on juvenile arthritis, psoriasis webcasts, and attended conferences where we get to meet other families. Staying connected to other parents and kids with this disease has been a great way to cope. You feel you are not alone.
How should families approach treatment? Could you share a bit about your journey finding the best treatment for Andy?
Jaime: Perhaps not the best question for us because Andy's nurse says "he's a tough nut to crack." we have to change his medication about every year and a half because Andy's body gets used to the medication and it no longer works well. Andy's been on the gamut of drugs, including these biologics: Remicade, Enbrel, Humira, Orencia, and now back to Enbrel with Methotrexate again.
We recently came back from a trip to Washington DC where we met with senators and our representative. We advocated on behalf of the NPF for more psoriatic disease research. It was a very empowering experience for the whole family. We felt like we really made a difference in taking steps to find a cure.
Published On: June 21, 2011