isabella soler header

JA Mom: “I Know Just Enough to Know I Don’t Know Enough.”

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.”

Continue reading JA Mom: “I Know Just Enough to Know I Don’t Know Enough.”

james-bradbury

NFL Player James Bradberry’s Grandmother Inspires for Charity

Grandmother Plays Catch with NFL Player James Bradberry…and Inspires Him to Take a Stand Against Arthritis (and Put It on His Cleats)

James Bradberry grew up near Birmingham, Ala. with his mom and younger sister and grandmother nearby. Born with a love for sports and natural talent, he excelled at football in high school and then was recruited by Arkansas State University’s football team. But his Southern roots called him home, so he transferred to Samford University and was later drafted by the NFL Carolina Panthers, starting 12 out of 16 games his first year. Continue reading NFL Player James Bradberry’s Grandmother Inspires for Charity

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.

Related Resources:

 

Patient Story - Karen Lomas

Nurse With Psoriatic Arthritis: “Take Care of Yourself”

As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Karen Lomas, 65, who works full-time as a nurse. Following, in her own words, is Karen’s story about living with psoriatic arthritis (PsA), which she was diagnosed with several years ago, and how the statistics she reviewed in Arthritis by the Numbers relate to her personally. Continue reading Nurse With Psoriatic Arthritis: “Take Care of Yourself”

kathy geller patient story

Rethinking Life With Severe Osteoarthritis

As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Kathy Geller, who touched many lives during the years she spent as an Arthritis Foundation exercise trainer and education program presenter – a role model for successful self-management. Following, in her own words, is Kathy’s story about living with severe degenerative osteoarthritis (OA) and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.

Continue reading Rethinking Life With Severe Osteoarthritis

liz morasso patient story

Liz Morasso: Support Networks Helped Her Adjust to a New Life

As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Liz Morasso, a licensed clinical social worker at UCLA’s department of radiation oncology who has volunteered for the Arthritis Foundation since 2002. That’s when, at age 16, she was diagnosed with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA). Over the years, she has immersed herself in leadership roles with the Foundation and speaks nationwide to inspire patients living with chronic illness.

Following, in her own words, is Liz’s story about living with these conditions and how the statistics she reviewed in Arthritis by the Numbers relate to her personally. Continue reading Liz Morasso: Support Networks Helped Her Adjust to a New Life

eileen schneider patient story

Patient Partner’s Words of Wisdom About Living With RA

As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Eileen Schneider, who is a registered nurse and has a passion for patient advocacy. Following, in her own words, is her story about living with rheumatoid arthritis (RA) and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.

Continue reading Patient Partner’s Words of Wisdom About Living With RA

bloggers arthritis communication

Voices: Have You Ever Hidden Your Arthritis?

Three influencers explain why they are outspoken about their rheumatoid arthritis (RA).

Thérèse HumphreyThérèse Humphrey

@TerezHumphrey; TerezFreemanHumphrey

Diagnosed in 1986, I kept my RA to myself because no one understood. There weren’t any treatments to stop the progression, and my doctor told me I could end up in a wheelchair. I was scared, and I wasn’t sure myself what was going on, so why burden others? Maybe if I didn’t talk about it, it would just go away.

Keeping it to myself only made me feel more isolated. In 2011, I started using social media to find others with RA. It is there I found my voice. By talking about the reality of living with RA, I finally felt validated, and more importantly, I was giving others – especially the newly diagnosed – encouragement and hope. It took me a long time to realize that being open to others is vital to teaching them the reality and impact of RA. Today, I am a passionate patient advocate and want to educate everyone who’s willing to care and listen about RA.

Continue reading Voices: Have You Ever Hidden Your Arthritis?

sharae mansfield

Benched by RA, Pro Hoops Player ShaRae Mansfield Still Shoots to Win

ShaRae Mansfield vividly remembers getting the call 17 years ago saying the Houston Comets had drafted her to play in the Women’s National Basketball Association (WNBA). For the Western Kentucky University (WKU) student, the chance to play professional basketball was a dream come true.

But her WNBA career was short-lived. While she had mad skills on the court, excelling at both points and rebounds, she also had frequent pain in her shoulders, hips and especially her left knee, made worse by a torn anterior cruciate ligament (ACL). ShaRae had undergone six surgeries on it, but her continued knee problems led the Comets to release her before she completed even her first season.

Continue reading Benched by RA, Pro Hoops Player ShaRae Mansfield Still Shoots to Win