It’s 500 miles door to door. Sixteen hours of driving time roundtrip, sometimes in treacherous conditions. Three days lost … at least twice every year.
That’s what Mason Merager and his mom have experienced over the past decade, just so they could see a specialist trained to treat childhood arthritis. They’ve had to plan their trips to coincide with summer school breaks and end-of-year holidays. Without financial support, they would have had to sacrifice Mason’s health because of the overwhelming costs.
A Thousand Miles, No Freedom of Choice
Mason has needed a specialist since he was first diagnosed with juvenile arthritis at age 3. The disease severely attacked his knees, hands and other joints, leading to several surgeries and difficult recoveries. His medicines made him drowsy and upset his stomach.
Mason’s treatments required grueling travel from rural Wyoming to Denver. Long road trips that made him miss school, and forced his mom, Annmarie, to take time off work. His younger sister, Mali, 9, pitches in, too. “She’s the best at heating up rice bags,” her big brother praises, “and hiding her disappointment when plans change or we have to miss her sports activities.”
Mason and his family have given up vacations and other special moments, like his hockey team’s championship game and participating in the baseball games he enjoyed when he was younger. By the time they return home from doctor visits, they’re exhausted.
“There were many times I would have loved some expert advice, or someone to look at something new that came up. But we’ve had to limit ourselves,” says Annmarie. Having JA has also affected relationships – on top of being expensive and the school and social time missed.
“You put your whole life on hold,” she continues. “Family time is altered. It takes away freedom of choice in planning your life. This disease can be pretty isolating.”
The Rheumatologist Shortage Dilemma
Currently, there are about 5,000 practicing rheumatologists in the United States, mostly concentrated in urban areas. These specialists are crucial to prescribing the best treatment for each patient with arthritis, a complicated and mysterious disease that demands educated guesswork.
But many rheumatologists are retiring, and not enough new students are signing up for rheumatology. There’s a projected shortfall of thousands of rheumatologists by 2025. It’s even worse among pediatric rheumatologists; eight states, like Wyoming, have none.
In Remission, Soaring Higher
Today, things are looking up for Mason, who is now 16. Last summer, he participated in a month-long pain management class at the Mayo Clinic in Minnesota, a roundtrip drive of 30 hours. What Mason learned helps him deal with the ‘here-and-now’ and not worry so much about ‘what’s next.’ As a teen transitioning to adulthood, his JA is under control for now; he’s currently in remission except for occasional flares a few times a year.
Mason attends our annual JA Conference as often as possible, as well as JA camps and Jingle Bell Run events in Denver. He’s also a relentless Arthritis Foundation Advocate and Ambassador, for himself and others with arthritis. He received our national Emerging Leader in Advocacy Award two years ago and has met with state and federal legislators numerous times to reiterate how urgent the shortage of rheumatologists really is.
Mason loves to advocate, and he thinks about running for president of the U.S. one day. But his big dream right now is to be a pilot. He’ll earn his pilot’s license by the end of this year; flying is something he can still do when his joints don’t allow him to walk.
Mason’s Sidekick … and Speaking up
Mason’s sidekick, his service dog, Toby, helps him be more independent. Toby knows 50 commands, which include fetching icepacks from the freezer when Mason’s joints are aching. He brings Mason his phone, alerts Annmarie when Mason needs help getting around, and wags his tail in pride knowing he’s a valued family member.
Mason’s message to others living with arthritis is to make their voices heard. “If we don’t speak up, there won’t be a chance to change what needs to be changed. Take action to make things better for everyone. It doesn’t just come to you.”
In Annmarie’s words: “It’s an unnecessary burden on families to have to travel extensively, when there could be help near home.”
“I don’t know where we’d be right now without a specialist,” Mason adds. “My life wouldn’t even be close to what it is now.”
Even if only ONE person struggled with arthritis, it would be worth the fight. The truth is 54 million Americans struggle with this devastating disease. It can keep you from holding a pen or getting out of bed. It can force you to give up the things you love. It destroys careers, causes financial hardship and sometimes it even kills. Be the ONE who helps end arthritis.
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