Parents, Children with JPsA: You Are Not Alone
Our family’s psoriatic arthritis story does not begin with me. It starts with my son who was diagnosed at age 4 with psoriasis and age 5 with juvenile psoriatic arthritis. It wasn’t until three years after his JPsA diagnosis that I received the mine.
My son’s diagnoses hit hard, much harder than my own. As a parent, you want only the best for your child. I wanted to be strong for him and tell him he was going to be just fine. Yet I felt alone and scared and wasn’t sure what I was telling him was true. I didn’t know what to expect or how to help him. I knew of no other patients, let alone children, who had these diseases.
My husband and I had so many questions:
- What does his future hold?
- Will he be bound to a wheelchair?
- Will he be teased or bullied?
- How does school fit into his life with psoriatic disease?
- What can we do to help him and how much help do we provide?
- What is next?
We didn’t know where to turn. We didn’t know who could help. Sure, my son’s doctors were amazing, but they didn’t have time to answer, nor did they have the first-hand knowledge, to answer these questions. Only another parent, only another child with JPsA would be able to connect with us the way we needed.
Thankfully, we eventually found other families to help us navigate these diseases. We were overjoyed to find out we were not alone. We connected with them via the National Psoriasis Foundation and Arthritis Foundation online message boards. It was the best feeling to know there were others who were going through the same emotions as us. It changed our world into one of uncertainty to one of hope. The Psoriatic-Arthritis.com community is also great resource to connect patients online.
As wonderful as it was to meet people online, it still wasn’t the same as getting that hug from the mom who’s been through it. We began seeking out events where we might find other families. We attended the Arthritis Foundation's Arthritis Walks (now called the Walks to Cure Arthritis) and the National Psoriasis Foudation’s Team NPF Walks. Meeting other families immediately turned my tears of fear into tears of joy.
Conferences to unite
Thankfully, both of these organizations recognize the need to connect children and teens for their own peer support groups. They need it just as much – maybe even more – than parents. I highly recommend both the NPF’s National Volunteer Conference (held in 2017 and every other year for kids with psoriasis and juvenile psoriatic arthritis) and AF’s JA Conference (held every year in two cities for children with all types of arthritis).
Parent tracks include sessions to learn more about the disease and treatments options, as well as have frank discussions with professionals and other parents. Kids and teens are split up by age, and they get the opportunity to learn about their disease, connect with other kids and make lasting friendships. There is always scheduled time for children and parents to come together and share what they’ve learned.
Camps for kids
The AF holds many juvenile arthritis camps during the summer for kids to meet other kids with arthritis. It’s a time to learn about their diseases, but more than that, it’s a chance to make friends and challenge preconceived limitations to make the best summer adventure. And, to help ease parents’ minds and give the kids the best care, they are staffed with medical professionals familiar with juvenile arthritis.
My son has attended Camp Dakota in Michigan since age 7, missing only one summer due to a competitive college scholarship program that overlapped with the camp dates. After being a camper, he graduated to a counselor-in-training, and now a counselor. It’s his home away from home, and there’s no place he’d rather spend his summers.
Whether online message boards and support communities, conferences, or camps for kids, there are opportunities to meet other families and children who are dealing with the ups and downs of juvenile psoriatic arthritis. These connections can, and often do, transform into lasting friendships.
How do you plan to recognize PsA Awareness Month?