Erin Edgar was just 11 years old when she first started to complain of joint pain. Her elbows hurt and her knees hurt, and the pain eventually forced her to give up dance, which she loved.
“When your child is 11, you’re not really sure whether it’s the aches and pains of growing or things like that, and so I kept saying, ‘We’re going to have to take you for blood work,”’ her mother Dawn Edgar recalled.
That day soon came. When Dawn drove her daughter to school one day, Erin couldn’t unbuckle her own seatbelt. Follow-up testing revealed that Erin had juvenile arthritis, the most common form of arthritis in children.
“A lot of people, when I tell them that I have arthritis, they say, ‘Oh, my grandma has that,’ or, ‘My grandpa has a lot of pain from that,’” said Erin who, today at 16, undergoes treatment at Connecticut Children’s Medical Center. “It’s not the best thing to have associated with your disease, but I’ve gotten better at handling it now, and I would like to spread the word that kids get it, too.”
Erin helped raise awareness about juvenile arthritis and shared her inspirational story with more than 200,000 listeners from across the state who tuned into the iHeartRadio’s inaugural “Weekend of Giving” November 30 through December 2 to benefit patient care and research at Connecticut Children’s.
Kids Get Arthritis, Too
“When we talk about arthritis in kids, there are actually 40 or 50 different types of arthritis, but the most common is juvenile arthritis, and that’s what Erin has,” said Dr. Larry Zemel, who is Erin’s physician and Head of Pediatric Rheumatology at Connecticut Children’s. “Erin is like a lot of other kids we treat. We see about 3,000 children a year for arthritis, chronic pain, Lyme disease and other forms of arthritis. In Connecticut, there are about 3,000 kids with arthritis and about 250,000 children across the country.
“There are two basic types of arthritis,” Dr. Zemel explained. “One is osteoarthritis, which we associate more with older and middle-aged people, and then there is inflammatory arthritis, which includes rheumatoid arthritis in younger adults, and juvenile arthritis, psoriatic arthritis and other types of inflammation. That is the type that is more likely to cause some bone changes and bone damage.” Although there is no cure, treatment options have been steadily improving.
“For the last 25 years, we’ve been benefiting from a revolution in treatment, mostly with a class of drugs referred to as biologics, shared with cancer treatments and certain gastrointestinal disorders,” Dr. Zemel said. “When I started out 40 years ago, we had kids in wheelchairs; now, we hardly ever see that. We’ve really made remarkable progress.”
Standing Up to Arthritis
Having juvenile arthritis has not kept Erin down.
“I’ve been feeling pretty good,” Erin said. “I recently went back to dance, which I had to stop doing because of my arthritis, and that was a really big thing for me. I’m a little sore from dance practice last night,” she told iHeart listeners, “but it has been going very well and I’ve been feeling good.”
Erin also encouraged other kids diagnosed with arthritis to do what they love and not give up hope. “Honestly, I could say, ‘Get up and do whatever you want to do and don’t let anything hold you back, because this arthritis held me back in the beginning and it’s gotten a lot better and I’ve made some big strides with that. So, do what you want and don’t let anything keep you down,’” she said.
“I think Erin’s optimism really plays into her outlook, and she is so positive most of the time – but not all of the time – because it is hard and it is a chronic illness,” Dr. Zemel said. “Erin and I have very active conversations about treatment options. I think with the right tools, she can live a very long, relatively normal and productive life.”
A Weekend of Giving
The iHeartRadio Weekend of Giving unfolded on Friday, November 30, with Kiss 95.7’s “Flush the Format” segment. From 6 am until 7 pm, Kiss 95.7 accepted donations from their listeners to play song requests on the air. From 3 pm to 7 pm, 97.9 ESPN Radio Hartford featured a Connecticut Children’s patient story or team member interview and encouraged listeners to donate by texting to a special number. At 5 pm Friday, all of the iHeart stations in Connecticut, including Country 92.5, The River 105.9, KC101, 100.9 The Beat, 960 WELI AM and News Radio 1410 aired promos as well.
On Sunday, December 2, Community Access featured three patient family stories, including Erin’s, plus interviews with several Connecticut Children’s team members. Click here to listen to all of the Connecticut Children’s patient stories.
“We are very appreciative of our new partnership with iHeart Media,” said Scott Organek, Associate Vice President, Children’s Miracle Network Hospitals at Connecticut Children’s. “We thank them and all of their listeners for helping us provide world-class care right here in Connecticut.”
“We are excited to bring the Weekend of Giving to life and to work with Connecticut Children’s Medical Center,” said Steve Honeycomb, President, Hartford Region, iHeartMedia. “The Center has touched so many of our listeners’ lives and it was great to see all the stations, our sponsors and listeners really rally together to give back.”