Meet Kat!
Kat was diagnosed at age three with Spondyloarthropathy. After three months of symptoms while two pediatricians worked to rule out other diagnoses, she was referred to Boston Children’s Hospital (BCH).
“What two excellent doctors were unable to diagnose in three months, our doctor was able to confidently identify within 5 minutes time,” Kat’s mom Kirsten says.
“That first appointment was shocking, but our doctor calmly and clearly explained each step of her diagnostic process, what the disease was, and how treatment might proceed. While the confirmation of JA was overwhelming, we were incredibly grateful to have been quickly referred for expert care and thankful that our doctor was so compassionate and knowledgeable.”
She went on to develop comorbidities including dysautonomia, which is currently causing Amplified Musculoskeletal Pain Syndrome (AMPS) and Gastroparesis. Kat is now 16 and Kirsten says she struggles to live a typical teen life while keeping her disease and its symptoms in check. She has chronic pain and low endurance due to her disease.
At the time of Kat’s diagnosis, there were no pediatric rheumatologists in their home state of Maine and now there is only one. The shortage led Kirsten to connect with more of the community across the country,
“I was surprised by how dramatically differently our children's conditions were managed, how many parents weren't told of certain parts of care - like uveitis screenings- that we were taught were essential, and how differently practices handled all aspects of interacting with their patients and families.”
This led her to join the Parent Working Group and she considers it humbling “to be in a room or on a call/Zoom with this impressive group of people, all working together, ego-less, to further the quality of care of our children.”
Kirsten says the work PR-COIN does is helping more and more kids with JA receive the same excellent whole-child care that Kat receives.
“We're very lucky. Kat is cared for at BCH as an entire being,” she says. “It's exciting to know that PR-COIN is working on concerns like mental health and transitioning care that are so important to address.”
Visit our Get Involved page to learn more about how you can get involved in PR-COIN.