Photo: Courtesy of Corinne Pinter
Just one day before Emily Pinter turned 2, she had a fall that changed her life. She was playing on a swing set when she climbed up a ladder and, instead of stepping down, she stepped off the play structure and fell 3 to 4 feet to the ground below.
After doing a quick check on her daughter, Corinne, Emily's mother, recalled telling herself, "She’s not bleeding, she’s breathing, her bones aren’t broken, her eyes look OK, no bruising; everything is OK.”
In fact, everything seemed fine until the next morning when Corinne went to change Emily for her birthday party and immediately noticed her daughter’s left pointer and middle finger were swollen. Her right knee and ankle were also swollen. Corinne immediately took Emily to an emergency center for an X-ray and lab work.
"Everything looked fine. Her lab work was a bit elevated, but the doctor’s said it could be reactive arthritis which could be a result of a virus,” Corinne recalled.
Following the slightly elevated lab, Corinne took Emily to a pediatrician for follow up who reran her labs and almost immediately diagnosed Emily with Juvenile Arthritis (JA), not reactive arthritis. Emily then scheduled another appointment with Texas Children’s Dr. Eyal Muscal who conducted tests, such as a bone scan to rule out cancer and other non-inflammatory disorders, and began to treat Emily for JA (also known as juvenile idiopathic arthritis, JIA).
Corinne recalled thinking, "Wow, does this really happen to children? I had so many questions. Will she have a normal life? Will she be able to play sports? Can she have a baby? Is she going to outgrow this? Will she have to be on medications for the rest of her life? All these questions start flooding your head and you start to get angry, knowing this just isn't right."
What Corinne came to learn, and what all parents in similar situations should know, is that up to 60-80,000 children in the U.S. have JA and up to 300,000 children have related rheumatic disorders. It is actually not an uncommon chronic childhood illness, yet every kid with JA is unique and each requires their own targeted treatment.
Corinne was able to seek JA care for her daughter due to their family’s proximity to a large pediatric rheumatology center, Texas Children’s Hospital. The JA journey quickly became overwhelming for Corinne. Deciding which medication was best, what method the medication would be administered, (such as oral or injectable) and how long to stay on the medications. These were all questions Corinne had about her daughter’s treatment and the long-term outcome.
“Eventually, Emily was placed on a regimen of immune modulating medications she responded to very well. Were there side effects and setbacks? Absolutely yes, and yes; her regimen has changed over the years. We had to adapt to find which medication and which method of delivery was best for Emily,” Corinne explained.
Through this process, Corinne remarked that the trusting relationships she built with Emily's care providers really helped her through this journey.
"It’s super important for families to partner with their providers. Building that trusting relationship is essential. As parents, we have a level of experience and expertise living with this. We all want the same thing – the best outcomes for our children. So, be an advocate for yourself and your child, but also work closely with the care team,” Corinne suggested.
For Emily, who is now 11, her JA journey is filled with highs and lows, but she is doing very well. Her joints symptoms have been quiet for two years with no active arthritis in them. With the assistance and guidance of her physicians and advanced practice providers, she tapered off the medication and eventually stopped taking meds in March 2019. Her disease is controlled, but she still has occasional pain and fatigue.
"I’ll say it again, every kid with JA is different. One kid may be on stronger meds and they are running, jumping and playing – that’s their story. Another child may be on the same meds, same protocol and they may get fatigued, may not be able to participate in competitive sports, may need extra time for school and that's their own journey. We can’t compare our story to anyone else’s. Each kid with JA, each case, each situation is different, and that’s OK," Corinne said.
For Corinne, Emily's diagnosis with JA allowed her to find a whole new community she didn't know existed. Six years ago, she attended the Arthritis Foundation's Jingle Bell Run and quickly became involved locally in empowering families with JA to find community and support while they navigate this new journey.
"Since our first Jingle Bell Run, we’ve done walks, family days, Arthritis conferences (one was just held in Houston) and so much more. One of the best things people can do is to start a relationship with your practitioner and find your local chapter of the Arthritis Foundation,” Corinne said.
Emily will be the youth honoree this year in the Jingle Bell Run in Sugar Land.
Corinne and Abby (another mom Corinne met at a JA Family Day through the Arthritis Foundation) will be Live Yes Connect JA parent facilitators for a local JA parental group.
Corinne and Abby hope to help JA providers understand family journeys. They seek to ensure rheumatology centers provide age-appropriate, family-centered care. They also hope to increase awareness of rheumatic disorders in their communities. They lament that there are less than 350 pediatric rheumatologists in the U.S. and that many families have to travel long distances to see a pediatric rheumatology provider.
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Corinne recommends that “JA families get connected with each other. Families won’t have the same story, but they are like you, and their journey often similar.”