Tag Archives: juvenile arthritis

Voices bloggers discuss joy

Voices: How Do You Cultivate Joy?

Gina Mara

Twitter @ginasabres

Gina Mara for VoicesJoy 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.

Joy Ross

Facebook @Through the Eyes of Joy

YouTube @Joy Ross

Joy Ross for VoicesI 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.

Lene Andersen

www.theseatedview.com  

Lene Anderson for VoicesGratitude 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.

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charcandrick west jia

Every Catch Deserves a Touchdown Dance

Charcandrick West, professional football player with Louisiana roots, gets real about what keeps him going, how no hurdle is too high and why he likes to win on and off the field.

Q1: When did you realize you wanted to play football professionally?

I don’t remember the first moment I grasped a football, but the second I did, probably around age 6, I was hooked. I still remember being a kid, looking up from the field and seeing my mom and dad cheer me on. It was a thrill to know I was making people in the stands happy by giving the game my all.

I knew that I had the “it” factor – and my parents believed in me, too, which made all the difference in the world. My goal was to leave my legacy in my hometown of Cullen, Louisiana, and graduate to the “bigs.”

Continue reading Every Catch Deserves a Touchdown Dance

anna legassie walk to cure arthritis

Anna Legassie: Still in the Race

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.

Continue reading Anna Legassie: Still in the Race

kate wingate jbr youth honoree

Kate Wingate, Jingle Bell Run National Youth Honoree

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.

Continue reading Kate Wingate, Jingle Bell Run National Youth Honoree

charcandrick west

Unstoppable: Charcandrick West’s Story

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.

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maude lewis

“Maudie” Stuns and Inspires Audiences

Juvenile arthritis awareness is in high gear – with Juvenile Arthritis Awareness month and two JA Conferences being held between July and August, this is the perfect time for director Aisling Walsh’s movie “Maudie” to hit theaters in most major markets.

“Maudie,” based on the true story of Maud Lewis, follows Maudie’s debilitating experience with arthritis throughout her life. Set in 1937, the movie begins with Maudie painting flowers on a wall with great difficulty. Sally Hawkins’s portrayal of Maud Lewis shines, as she next contorts her body to seem very small as Maudie sits smoking on the porch of her shrewd Aunt Ida’s house (Aunt Ida is played by Gabrielle Rose). Upon learning that the house will go under construction, Maudie is quick to find an opportunity as a live-in maid in a tiny shack with a gruff man named Everett (played by Ethan Hawke). And though rocky at first, the optimist and the pessimist, both social outcasts in their respective ways, begin a relationship.

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2017 Walk to Cure Arthritis National Youth Honoree Mariah

A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss

When Mariah Aquino-Truss was just five years old, she was in so much pain each day she told her mom, Tory, that she “didn’t want to be here anymore.” Imagine hearing such an admission from your young daughter who was newly diagnosed with a form of juvenile arthritis (JA) known as polyarticular spondyloarthropathy.

Polyarticular spondyloarthropathy is a juvenile form of ankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
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Amy and Kylie McCormick

Champions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis

When you meet Amy McCormick and her daughter, Kylie, of Hauppauge, New York, you instantly feel as though you’ve known them for years. They both consistently greet you with warm smiles and joyful hellos, chatting about their love of Hamilton, the arts and their newly adopted rescue puppy named Autumn.
Continue reading Champions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis

Louisiana Walk To Cure Arthritis

Volunteer Kick-Starts Successful Louisiana Walk To Cure Arthritis Event

Born on July 4, Geoff and Sara Morthland called red-haired Ellery their “firecracker,” but at 19 months old, only Ellery’s knees were inflamed. They soon discovered the reason: juvenile arthritis (JA).

“I felt so powerless, Sara Morthland, Ellery’s mother, said. “I couldn’t make it go away.”

The Baton Rouge, Louisiana resident turned emotion into action and searched for a fundraiser supporting an arthritis cure. When she discovered Walk to Cure Arthritis, Sara was elated—only to learn Louisiana did not have a Walk.
Continue reading Volunteer Kick-Starts Successful Louisiana Walk To Cure Arthritis Event