By now, those of you reading this are likely experiencing a shelter-in-place order, school cancellations, or other social distancing situations in your own communities due to the COVID-19 global pandemic. Here in California, our state is under a statewide shelter-in-place directive and I am on week 2 of 4 with my children’s schools transitioning to “distance learning”. Some districts in our area have already announced this will continue for the remainder of the school year. If you are anything like me, this sudden and massive change has rocked your family unit and you are trying to navigate the unfamiliar.
Conner, Ryan and Brayden Sowa
The Sowa family’s journey with arthritis started years ago when Ryan, the middle brother, was diagnosed. Starting at 15 months old, Ryan would get random fevers and unexplained rashes, eventually leading to abdominal and joint pain. There were days he couldn’t even walk. Continue reading 2020 WTCA Youth National Honorees
Support the Arthritis Foundation and the 54 million Americans with arthritis.
Meet Shane Cox
When you meet Shane Cox of Petaluma, California, his quiet, calm demeanor gives little away about this young man. But whether he is speaking as an honoree at his local Jingle Bell Run or at the California Coast Classic, it’s easy to realize he has experienced more in his young life than most his age. Continue reading No One Should Be in Debilitating Pain, Especially at 10 Years Old
Support the Arthritis Foundation and the 54 million Americans with arthritis.
Meet Cassidy Middleton
Cassidy Middleton is a happy, thriving 8-year-old who has a loving affinity for Minnie Mouse and spending her days horseback riding in the warm, Tucson, Arizona, sun.
In December 2013, Cassidy was diagnosed with autism, and that’s when the Middleton family’s world changed. Most weeks were filled with therapists and appointments, and just when things started to settle down, Cassidy’s mother, Kari, noticed Cassidy was a “bit knock-kneed” and “walking funny” for a 3-year-old. After consulting with their pediatrician, who referred the family to a pediatric rheumatologist, Cassidy was diagnosed with juvenile arthritis (JA). Continue reading No One Should Be in Debilitating Pain, Especially at 8 Years Old
Among patient partners who reviewed Arthritis by the Numbers – a collection of verified arthritis facts and figures – was the Soler family of Georgia. Robin Soler has been active with the Arthritis Foundation ever since her younger daughter, Isabela, was diagnosed with juvenile idiopathic arthritis (JIA). At the time she was one of the youngest children in the state to be diagnosed with JIA at just 12 months old.
Over the past 15 years, mother and daughter have seen about 50 different doctors and scores of other medical experts. Isabela has taken at least 20 different types of prescription drugs – consuming more than 15,000 pills in her lifetime, not including antibiotics and other normal childhood drugs. She has missed countless parties and playdates, and one recent semester had to skip 7th period 21 times for doctor’s appointments.
Isabela’s mother, Robin, is a developmental psychologist and senior scientist at the Centers for Disease Control and Prevention in Atlanta. Robin has had her own personal experience with arthritis, diagnosed with fibromyalgia when she was 26, though her chronic pain goes back to her mid-teens.
After reviewing arthritis statistics we’ve collected, Robin’s main takeaway: “I am happy to know there is information out there, but I’m concerned about the pictures the numbers paint for parents. We and our children need to be hopeful.”
Joy is something that we feel robbed of when dealing with everyday symptoms of rheumatoid arthritis (RA) and doctor appointments. When I first developed RA, I felt lonely and isolated. I couldn’t do things I used to do that brought me joy, especially during the holidays, like attend parties, drink or even be on my feet for long. Connecting with people on social media expanded my horizons about ways to find joy. Now, I send people positive messages to bring them joy, which also makes me happy. I’ve sent so many of these that now I receive them, too, when I least expect it. I’ve even gotten videos of people from across the country singing happy birthday to me. I am still participating in society, I just do it a little differently than others. I might not be somewhere in person, but when I send some simple words spreading joy, people know they are in my heart and mind.
I have always been a joyful person, but my complete loss of eyesight as a result of juvenile arthritis [JA] and my two young daughters’ diagnoses with JA, I have learned that joy is a choice. As a Christian woman of faith, I allowed God to teach me how to truly walk by faith and not by sight or on pure emotions. God began showing me the true meaning of joy even when the circumstances looked hopeless. Every single day I make the choice to begin the day on a joyful note. My story of hope, perseverance and love is changing lives all over the world! If it were not for our challenges and my faith in Jesus, I wouldn’t have this beautiful perspective. I believe when you choose joy, you find strength, hope and purpose.
Gratitude is about slowing down enough to really notice joy, beauty, what’s funny and what’s good. It’s about experiences instead of things and remembering that I am a lucky woman. This is easier during the holidays, when reminders of love and all we have to be thankful for are all around, but I try to practice gratitude every day. Taking note of positive things and talking to positive people help. Going out with my camera to capture the beauty of the world always makes me feel better, and there’s nothing like sitting quietly with a purring cat on my lap to appreciate the present. Life isn’t about perfection or about stuff, but about love. Finding a way to express that – toward others, toward myself – is at the center of how I cultivate gratitude.
- Voices: Are You Grateful for Your Arthritis?
- Voices: How Will You Embrace Joy in 2018?
- Support Groups Can Help You Cope With Arthritis
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.
From Kate Wingate
My name is Kate Wingate and I’m from Greensboro, North Carolina. On the outside, I look like a normal 13-year-old girl, but I have juvenile arthritis (JA). Arthritis is a disease that doesn’t present in a way that you might think, and unless I’m having a flare, no one would ever know. I’ve had JA since I was 18-months-old, so I can’t remember what it feels like to not have pain in my joints.
Charcandrick West has juvenile arthritis. Now he’s dodging tackles in the NFL.
It’s a scene fans of the Kansas City Chiefs football team know well: Charcandrick West crashes into a tackler, spins and breaks free, then shifts into high gear as he races downfield. Yet Charcandrick, now in his fourth season as a running back for the Chiefs, never forgets that he has faced a more challenging opponent: systemic juvenile idiopathic arthritis (sJIA). It appeared at age 14, and symptoms became so severe that one doctor predicted the teen might never walk again, much less play football.
For 17-year-old Allison Alberts of Sturgeon Bay, Wisconsin, waking up with pain is an everyday occurrence for her. Some days the pain is manageable and can be helped along by a hot shower or a run to loosen up her body. Other days, Allison might struggle to get out of bed and looks to her father, Jamie, to help her walk or give her joints a comforting massage.
“There are many days I wish I could be normal, let alone feel normal for a day – a day without any pain, “says Allison. “But complaining does nothing. Complaining won’t take away the pain and complaining won’t allow my fingers to look normal. The way I go about my day is to let my arthritis and my body know that they will not stop me.”