#IGiveBeyond: Autoimmune diseases like rheumatoid arthritis tend to travel in packs. What Jillian Reid taught her father about inner strength.
Bandaging boo-boos and wiping away tears are essential duties in any parent’s job description. So when Joseph Reid’s six-year-old daughter, Jillian, took a tumble while roughhousing with her brother four years ago, he applied ice to her swollen ankle, handed her a popsicle, and offered a sympathetic dose of parental love.
Most childhood ailments and injuries heal quickly. This one didn’t get better.
A few days later, with the ankle still inflamed, Reid took Jillian to her pediatrician. The doctor immediately noticed something wrong. Jillian’s knees were also swollen. “Through the pediatrician’s eyes, we were able to see some things we hadn’t noticed before,” Reid says. When the doctor asked Jillian to run, she held her knees unusually close together. A pediatric rheumatologist soon discovered the cause of the swollen joints and awkward gait – juvenile rheumatoid arthritis (JRA).
Guilt is another requisite part of parenting, and it set in quickly. Reid wondered – had Jillian been suffering from arthritis for months, or even years? Had he missed the signs?
Reid and his wife, Kim, scoured the internet for information about the disease that had gripped their daughter’s joints. What they discovered terrified them. “We heard horror stories,” Reid recalls. There were tales of barbaric-sounding treatments – giant needles to administer steroid injections, and infusions of powerful drugs to dampen the overactive immune response that was battering Jillian’s joints.
Would Jillian be subjected to painful treatments? What effects might the drugs have on her still-developing body? “There’s all these potentially scary paths you can go down,” Reid says. “We didn’t know what our path was going to be.”
Jillian’s doctors started her on a relatively tame regimen – a liquid version of the disease-modifying drug, sulfasalazine (Azulfidine) to calm joint inflammation and prevent further damage. The drug worked. Jillian was able to go back to being a normal elementary-schooler.
Then, just as Reid started to think his daughter had gotten off easy, Jillian began to tire out more quickly than usual. During swim practice, she’d been able to glide through multiple laps with ease. Now she could barely make it from one side of the pool to the other.
Autoimmune diseases like rheumatoid arthritis tend to travel in packs. Many people with one of these conditions have at least one other. “In Jillian’s case, it was Crohn’s disease,” Reid says. Crohn’s inflames the intestines, causing symptoms like abdominal pain and diarrhea. The disease also blocks the intestinal absorption of nutrients from foods. Jillian was deficient in iron, which had led to the anemia that caused her fatigue.
Before her diagnosis, Jillian had been a good enough swimmer to earn a spot on the Parkville Piranhas, a YMCA swim team in her Kansas City, Mo., suburb. Crohn’s-related fatigue forced her to give up the sport.
Compelled to find a replacement activity, she settled on Taekwondo – a Korean martial art. The movements seemed to sit better with her sore joints and didn’t aggravate her fatigue. “Tae kwon do is much more focused on precision of movement than on speed of movement,” Reid says. “It focuses on flexibility. It focuses on movement. All things that are good for her.”
A special soul
Jillian’s disease eventually reached a point where Azulfidine wasn’t enough to keep the joint damage at bay. She needed regular infusions of the biologic drug infliximab (Remicade) to keep her overactive immune system under control. These infusions require her to sit in a hospital bed for five or six hours at a time, while the IV drips medicine into her vein. On top of that, she takes the immune suppressing drug methotrexate, plus 12 to 15 vitamin and mineral supplements daily to make up for the nutrients her body can’t absorb.
The pills and injections would be tough on an adult. At just 10, Jillian has had to be stoic well beyond her years. Her father calls her “a trooper.” “Jillian’s always been a special soul,” he adds.
In the early days of blood draws and injections, Reid had to hold Jillian in his lap and help the nurse steady her arm while the needle went in. He’d tell her, “You’re going to be brave, right?” He always rewarded her bravery with a special prize.
In time, Jillian got used to the sticks. A turning point came when a nurse gently asked, “Do you want me to tell you when I’m going to do it?” Jillian replied, “Actually, if you don’t mind, I’d like to watch.”
“Instead of crying or anything along that line, just a single tear rolled down her cheek,” Reid says. “And then she snuffled a little bit and she looked at me and said, ‘Do I still get my bravery prize?’”
Today, Jillian is such a pro at injections that she lets training nurses test out their needle skills on her arm. When they do a good job, she praises them in the lingo of their profession, saying “Good stick!” “It’s a point of pride with her to be a good patient,” her father says.
Motivated by hope
Once Jillian had gotten her disease under control, the next logical step was to see how she could make a difference. She realized that by raising money for research, she could help ensure that other kids with JRA don’t have to go through the same tribulations she’s endured.
At first, her father was reluctant. “I didn’t want her to potentially be exposed to something that might scare her. When I look back on it, I was actually trying to protect her from things that might scare me,” he says.
During Jillian’s first fundraiser for the Arthritis Foundation, she collaborated with a professional artist to create a piece of art for auction. Not only did she raise a lot of money for the cause, but she also got her first chance to interact with other JRA kids. “Once she started swapping war stories with the other kids, she learned ‘Hey, I’m not the only one,’” her father says. “She saw that she didn’t need to be brave alone.”
Buoyed by her first attempt at fundraising, Jillian entered the Walk to Cure Arthritis in Kansas City. Her team raised just over $3,000, coming in third place. Since then she’s raised money wherever she can – including by setting up lemonade stands and urging her friends to contribute. Recently, Jillian partnered with Kansas City Chiefs running back Charcandrick West, who also has rheumatoid arthritis, on the Singing for Superheroes video, “Body of Steel.” (Singing for Superheroes is an organization that empowers kids with serious illnesses.)
As Reid watched his daughter come alive a little bit more with each event, he had an epiphany. “This girl doesn’t want to sit here and be brave while arthritis attacks her. She wants to find arthritis and punch it in the face,” he says.
Over the past four years, Jillian has grown up under the shadow of juvenile rheumatoid arthritis. She’s learned how to wage her own kind of battle against the disease.
Reid has emerged changed from the experience, as well. “The toughest part of the transition for me was finding out that the way I personally deal with illness wasn’t the best way for my daughter to deal with illness…. Reaching out, getting involved, being engaged, fighting back.”
While the medical community pushes toward improved treatments for juvenile rheumatoid arthritis, and possibly a cure, Reid says affected families can also make an impact by pushing for greater awareness. “Ignorance is half the battle with arthritis,” he says. “Let’s educate pediatricians that kids get arthritis too…. Let’s talk to each other as parents.”
He says Jillian has made great progress, and today it’s hard for people who don’t know her to tell she’s sick. He’s also come a long way from the fear that gripped him in the early days of her disease. “My doctor said to me during the first session, when we were feeling the shock and awe of this diagnosis, ‘Don’t worry. I promise your daughter is going to dance with you at her wedding.’”
He adds, “We’re going to beat this thing.”
June 12, 2017
Christopher Nystuen, MD, MBA