Nineteen-year-old Madeline Miller says she’s always had trouble with pain in her feet, but when she was 16 years old, the pain spread to her wrists and knees—symptoms of an incurable, debilitating illness.
“I had just been sick for a while, I remember driving home from work and turning the heater on full blast in my car and holding my wrist to it,” Miller said.
Miller’s mother, Melanie, says she knew something was wrong when Miller had trouble putting on her shoes and buttoning her jeans.
“We took her to a hand specialist who treated her for three months, then Madeline said her knees felt hollow and weird, the hand specialist sent us to our pediatrician who sent us to the rheumatologist,” Melanie said.
Pediatric rheumatologist Dr. Emilina Lim diagnosed Miller with Juvenile Idiopathic Arthritis (JIA), which according to the Arthritis Foundation website, is the most common form of arthritis, affecting roughly 300,000 children in the United States.
Miller says she received this diagnosis on Aug. 14, 2014, the day before the start of her senior year of high school. Unfortunately, while Miller does have a form of JIA, her complete diagnosis wouldn’t come until much later.
Miller graduated high school an honors students and was awarded three scholarships to the University of Nebraska-Kearney.
As a freshman at UNK, Miller received steroid injections and “felt really good up to November” when the pain began creeping back into her knees. Miller says the pain was manageable, but then she contracted strep throat.
A moderately painful, but not uncommon nor untreatable illness, the strep jolted Miller’s immune system, which, in an attempt to fight off the bacteria, aggressively attacked her joints.
“I failed all my classes that semester because I couldn’t walk,” Miller said. “I got really depressed, lost around 30 pounds within two months. The one time I actually went to class, I threw up three times on the way there because I hadn’t eaten anything except my medications.”
The flare caused by the strep not only hurt Miller’s second semester.
“The flare did a lot of lasting damage,” Miller says. “I need a new shoulder and a new jaw, a lot of the pain I have right now is damage from that flare.”
Miller says that it was because of this arthritic flare that she had to leave UNK and move back home, but it was also this flare that led to her true diagnosis.
Late summer of 2016, Dr. Adam Reinhardt of Children’s Hospital and Medical Center discovered that Miller has Systemic Juvenile Idiopathic Arthritis, a condition ailing only 10 percent of children with JIA. Systemic JIA, according to the Arthritis Foundation website, “causes inflammation in one or more joints and is often accompanied by a high spiking fever (103°F or higher) that lasts at least 2 weeks and a skin rash.” It can also cause inflammation around the heart and lungs.
The costs of Miller’s illness are massive, both literally and figuratively. “Some of her shots cost the insurance company $4000 monthly, some cost $10,000 monthly,” Melanie said. “Currently her infusions cost the insurance company $22,000 every other week. We have really good insurance so we don’t have to pay much out of pocket, but Madeline cost the insurance company about $450,000 last year.”
Melanie said the emotional cost is high as well, and having a sick child being treated with medications that don’t seem to work is stressful.
“Be grateful for the ‘little’ problems your kids have,” Miller says. “When your child gets diagnosed with a serious disease it makes everything else seem unimportant. Be nice to people, you have no idea of the pain they are living through.”
Miller said she didn’t realize how close she and her mom were until she got sick.
“I spend a lot more time with my mom,” Miller says. “She cries at all my doctor’s appointments, which is annoying because I’m a sympathetic crier.”
Even with the infusions, injections and oral medications, Miller will never be completely cured of Systemic JIA.
“It will never be 100 percent gone, remission is possible but rare,” Miller says.
Miller plans to enroll in summer classes at the University of Nebraska-Omaha. She has some advice for people who may not be familiar with her illness:
“We aren’t lazy, we aren’t faking it, we do need that handicap tag and just because we’re young doesn’t mean we’re not disabled.”