Written by Ronny Bachrach
July marks Juvenile Arthritis Awareness Month. For our community, it’s an important time to educate people that #kidsgetarthritistoo and to bring attention to the challenges of living with an invisible chronic illness.
My 5-year-old daughter Sammy has a rare form of systemic arthritis called SJIA. Her immune system becomes overactive, resulting in inflammation of her organs, fever, and rash. So far, she hasn’t experienced joint involvement.
When she is stable and not flaring, she looks like any other five-year-old. She runs and jumps, draws and paints, is learning to read, and loves playing with friends. What people can’t see is the work it takes to keep her that way.
She takes medicine over a dozen times a day, has monthly infusions that take six hours, routine clinic visits with specialists, annual CT scans, quarterly eye exams, near-daily blood pressure checks, and various other appointments like DEXA scans, pulmonary function tests, and mental health check-ins.
Managing her prescriptions, pharmacies, prior authorizations, insurance communications, and appointments is a significant amount of work. And that’s just her medical care, let alone mine as a type 1 diabetic.
I’ll remind you, she’s only five years old and has been living this life since she was nearly two.
But the most challenging obstacle we face is her unruly immune system. Because it cannot be trusted to work at standard settings, it has to be suppressed to keep it in check. Many of the medicines required to do this are largely used in oncology. They are chemotherapies used to prevent the immune system from spinning out of control.
For our social-Sally, that’s been very hard. She’s missed many opportunities that other kids her age have experienced. Thankfully, since she’s been stable, she’s been able to participate in more “normal kid” activities like art, soccer, and gymnastics. We’re very grateful and excited for her to be starting kindergarten in the fall.
That introduces a new set of challenges. She’ll have to go to school masked to protect her from common kindergarten infections. As her parents, we will need to closely monitor how sick her classmates are and if that warrants removing her from school.
No one would realize any of these things watching her play on the playground or run through a splash pad. But it’s our reality, living with a child with the invisible illness that is her systemic arthritis.
So this month, please remember that kids get arthritis too, but you might not necessarily see what you think you know about arthritis.