The doctor’s prognosis was gloomy. “You should put your daughter in a wheelchair now, so she can adapt to being disabled,” he told Anna Legassie’s mother. Anna, 11 at the time, had just been diagnosed with systemic juvenile rheumatoid arthritis (SJRA, known today as systemic juvenile idiopathic arthritis).
Now 34, Anna recalls those words often. Like on that hot summer day in 2015 when she crossed the finish line of her first Spartan Race, a grueling five-mile dash that involved climbing walls, crawling through mud and overcoming other obstacles. A fitting metaphor for a woman who hasn’t let the challenges of arthritis stop her from living a full life.
Advocating for Better Future
These days, Anna lives in Boston with her partner, Vin Ellis, and a chocolate Labrador retriever named Penny. When not on the job as a development and communications manager for an academic research institute or working out – she’s a self-described “gym rat” – she volunteers with the Arthritis Foundation as an Advocacy Ambassador and Massachusetts advocacy chair. She is also the 2018 Walk to Cure Arthritis national adult honoree! As an AF advocate, she’s met with congressional representatives and testified before committees, speaking out on issues like improving access to medication.
She knows how much that matters, having battled with insurers to obtain coverage for the medicine she needs to manage her arthritis, which affects not only her jaw, shoulders, wrists, hands, hips and knees, but also her heart.
“Being able to advocate not only for myself, but on behalf of others has become a very powerful force in my life, says Anna. “Most importantly, I know I can help create a better future for other juvenile arthritis patients. I don’t want them to have to fight the same battles I have, but if they do, I want to be there to help them find their voices, too.”
Anna was an active child, but unexplained aches, fatigue, fever and frequent rashes and bruises plagued her. Then one night in 1994, after a long band rehearsal, Anna collapsed. She was diagnosed with SJRA within a week, and had both hips replaced at 14. Soon, the pretty and popular teen became known as the kid on crutches with the swollen face (from corticosteroids) and whose hair fell out (from methotrexate).
“High school was a living hell,” says Anna, who still finished in the top of her class and graduated around the time that biologics hit the market. Anna got a prescription for one and soon felt well enough to attend college. She started running and even thought about training for the Boston Marathon.
In 2002, Anna’s college career was interrupted by two blows of bad news: She needed another hip replacement, and her mother had been diagnosed with a terminal illness. So, she took a break from school to recover and help her mother, but in the process, let her own self-care slide. Unable to afford her medicine, Anna relied on over-the-counter pain relievers.
During this tough time, Anna found solace in running, but in 2009, she developed pain in both hips and needed surgery yet again. She had both hips replaced, but it took two attempts and some bone grafting to repair her right hip, bringing her to a total of six hip surgeries (plus one wrist and three knee surgeries) and inspiring the name of her blog, Six Hips and Counting (sixhipsandcounting.com).
Living Her Passion
Anna returned to college and followed her doctor’s advice to give up running. Until one day in 2015, she found an old pair of trail shoes in her closet. That reignited her passion, and she began running again.
Some criticized Anna’s choice to run despite her doctor’s advice, but she defends the decision. “Anyone with a chronic illness knows our grip on good health is so tenuous,” she says. “There might come a point when I can’t run and I can’t do all these things, and I don’t want to look back and have any days wasted.”
After the Spartan Race in 2015, she raced in 10 more events, but her running streak came to a halt in 2016 after tearing cartilage in her left knee. While repairing it, her surgeon found extensive damage from the arthritis. The knee needs to be replaced, but she’s putting it off as long as possible.
Anna cycles, swims and works out at the gym, but she isn’t running to preserve her joints. “There’s a finite number of times I can do this surgery and it be successful and I’m only 24,” she says. That means giving up her longtime dream of running in the Boston Marathon.
Attending this year’s marathon “was very emotional,” but Anna has a plan. Each year, the sponsor of the marathon stages a 5K race that passes over the finish line on Boylston Street. “I want that to be my last road race,” she says. “One way or another, I am running.”
Author: Tim Gower
Looking for a reason to stay active? Register for our upcoming Walk to Cure Arthritis 5K, where you can help raise funds for research, resources and a cure. Much more than just a walk event, it’s something even bigger than arthritis itself! Register today!
- Sign Up for a Walk to Cure Arthritis Near You!
- Advocate for Arthritis
- Learn about the Advocate Program
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