Meet Shannan O’hara-Levi
When Shannan O’hara-Levi was only 7 months old, her mother noticed that she would wake up from naps crying and grabbing at her knees. Mrs. O’hara took her to the doctor, only to be brushed off and told it was just “growing pains” that would eventually go away. Ironically, a few years later at a routine checkup, the pediatrician asked Mrs. O’hara why Shannan wasn’t brought in earlier for her red, swollen knees. That’s when Shannan was finally diagnosed with juvenile arthritis (JA).
Shannan would never crawl due to the pressure it put on her knees. She was told she’d be wheelchair-bound by the age of 6. Throughout her adolescence, every joint in Shannan’s body was affected at some point. She tried countless medications – most of them intended for adults – and went through numerous procedures, including having fluid drained from her joints and getting gold shots.
“When I was young, there was no Google or online forums for my mom to do research or connect with other parents of children with JA”, says Shannan, now 33. “We got in touch with the Arthritis Foundation and attended a local JA family day, which is where I was able to meet other kids with arthritis.”
In her adulthood, Shannan was further diagnosed with rheumatoid arthritis, osteoarthritis and Hashimoto’s hypothyroidism. A couple of years ago, she noticed her quality of life was diminishing due to the debilitating pain in her shoulders. Shannan was forced to stop teaching and practicing yoga, something she enjoyed six to seven days a week.
“It got to the point where I was flaring really badly, and each day consisted of going to work, coming home… and that’s about it,” she says. “I couldn’t move my arms by the end of the day.”
Earlier this year, Shannan had bilateral total shoulder replacement surgeries and has been working hard to recover. While she can’t practice yoga or run yet, she makes it a point to stay active by walking with her dog at least three miles a day, weather permitting.
“The hardest thing about having arthritis is that it’s easy to be misunderstood by people,” Shannan points out. “Many times, people might look at me funny if I need to use a handicap pass or leave work on bad days. Sometimes I’ll hear, ‘You don’t look sick,’ or ‘Oh, you’re fine, you’re just milking it.’ It can be hard not having people to relate to.”
“Connection – that’s what the Arthritis Foundation means to me,” she continues. “A few years ago, I reconnected with the Arthritis Foundation and was invited to attend a JA family day. I’m in the second year of being a Platinum Ambassador, and have attended the National Juvenile Arthritis Conference, Advocacy Summit, Arthritis 101 on Capitol Hill and was recently a patient representative at this year’s American College of Rheumatology Annual Meeting.”
As 2018 draws to a close and you think about those in need, you can help make a difference in the lives of people like Shannon and many others. Support the Arthritis Foundation’s life-changing work by making a tax-deductible donation this holiday season. When you give, you’re bolstering the Arthritis Foundation’s commitment to over 50 million Americans with arthritis, helping them say Yes to living their best life while helping us make more strides toward finding a cure.