Category Archives: Juvenile Arthritis

#LiveYes & Fight for Better Access to Care

By Sarah Cloud

It’s tough to fight an unseen battle from an uneven playing field. My son was diagnosed 11 years ago with juvenile idiopathic arthritis (JIA), my husband four years ago with ankylosing spondylitis (AS), and myself a few years ago with rheumatoid arthritis (RA). We are active every day in changing the platform for families like ours to gain knowledge on how to access and receive care in non-urban areas.

In 2018, I decided to enroll in college. That was a massive step for this JIA mom and wife. I need to know how to fight for my family in a world that is very complicated medically. I have learned, through the years of my involvement with the Arthritis Foundation, just how lacking my access to care was. What I didn’t know until I started studying for a degree, in patient navigation and healthcare management, was how large the gap was in my health literacy. If I — a mom of a fantastic young adult with arthritis, and as the wife of a spouse with ankylosing spondylitis, and as an RA patient myself — was lacking health literacy, how would that look for the families I am trying to serve and empower?

What I learned through gaining these two degrees were a few key lessons.

  1. As the mom of a juvenile arthritis (JA) warrior, I knew more than some of my teachers. When teaching how to access drug therapies and service programs, my teachers had never thought of the strategies I learned from other JA moms. Never underestimate the collective brainpower of the JA Mom Tribe. If it can be done, they will find a way.
  2. When it comes to the complexities of insurance regulations, care plans, federal regulations and such, you really should get a degree for what we do every day to access our care. However, I also learned the right way to navigate the system and how to do that effectively and to speed things up when needed.
  3. The biggest key takeaway from this learning experience is that we can’t fight for what we don’t know. We need to educate ourselves and our peers on what it means to live life to the fullest with arthritis. We need to educate our communities on how to access care so we can live our best life.

If you have had experience in access to care that might help us educate others, please reach out and share your story with the Arthritis Foundation. I so often hear from others that their voice is not as powerful because they feel their collective experience isn’t as difficult. It’s still the voice of our collective experience. I want to hear from every family about how they fight access barriers. Is it a lack of infrastructure, lack of providers, a lack of resources for your community? What is your barrier to care, and what can we — as moms, wives, sisters, dads, brothers and fellow warriors — do to lift the voices of those who need help? How can we take power and change the conversation?

Join me and my family in the fight and take action to be an advocate for all of us with arthritis.

Gain a better understanding of your health care coverage and all the insurance terms. Visit the Arthritis Foundation’s RX for Access. This resource can help you understand how to choose the right coverage for your arthritis care needs and help you navigate paying for care and managing insurance claims.

 

Gerica’s Tips for the “New” Normal

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.

Continue reading Gerica’s Tips for the “New” Normal

Wait, Kids Get Arthritis?

“Kids don’t get arthritis.”

 That’s the first thing Chrissy and Jason Rose said when the doctor told them their 13-month-old son had juvenile arthritis.

“As an infant, Carson was a cranky baby,” Chrissy explains. “He would scream and cry and didn’t sleep through the night until he was more than a year old. He would lay on the floor and pull at his legs. We didn’t know what was going on and were kind of going crazy. Continue reading Wait, Kids Get Arthritis?

Shane Cox_Stories of Yes

No One Should Be in Debilitating Pain, Especially at 10 Years Old

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

No One Should Be in Debilitating Pain, Especially at 8 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

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.”

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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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