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A Mother’s Fight to Free Her Son From Pain

A Mother’s Fight to Free Her Son From Pain

By Kristine DiDesidero, Mount Sinai, New York I remember the pain as a child. I complained to my mom about pain in my legs. Some nights I cried myself to sleep. My mom took me everywhere for answers. The doctors told her I had growing pains. I am 4 feet, 11 inches, and stopped growing in fifth grade. The reality is that I’ve spent most of my life with what I now know as a variety of autoimmune diseases.At 24, recently married, I became ill and was hospitalized. The doctors said they thought Ihad fibromyalgia. Over the years, I’ve also battled ...more
Introducing the 2020 Juvenile Arthritis Conference Theme: Family Reunion, Stronger Together

Introducing the 2020 Juvenile Arthritis Conference Theme: Family Reunion, Stronger Together

Do you live with juvenile arthritis? Then you’re part of our extended family! In 2020, we’ll celebrate connections and spend quality time together at a Family Reunion like no other. From across the country, at one EPIC event, JA families will gather to draw strength from each other and become more powerful than ever. For long-timers and newcomers alike, the National JA Conference is the place to be for fun in the summertime!We are thrilled to announce the 2020 National Juvenile Arthritis Conference theme: Family Reunion, Stronger Together. A family reunion represents the awe-inspiring strength shown by the children, families, and caregivers ...more

The Fight for Step Therapy Reform is Personal

Advocacy in Action. What a great day spent with the Arthritis Foundation at the Tennessee State Capitol! On Tuesday, February 4th, my girls and I participated in our first Arthritis Advocacy event. We were there to talk about the TN Step Therapy Reform bills, HB 1866 and SB 1935. This was a great experience for me and I’m so glad I was able to share the experience with my kids. We are already looking forward to returning to the capitol in the future to continue educating and sharing the experiences of arthritis patients with our Representatives! Before we arrived at the ...more
2020 WTCA Youth National Honorees

2020 WTCA Youth National Honorees

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. Ryan went through a lot of testing and treatments, resulting in unanswered questions and misdiagnoses. It wasn’t until he was a month away from being able to play football that he was finally seen by a rheumatologist. Ryan had looked forward to playing football for many years after watching his older brother play. The day ...more
People Before Politics: Congress Must Solve Surprise Medical Billing

People Before Politics: Congress Must Solve Surprise Medical Billing

When it comes to medical billing, transparency is vital. Individuals undergoing an emergency procedure or surgery often face heavy financial burdens through co-payments and deductibles alone; the stress and anxiety of recovering both physically and mentally from a medical issue already takes a tremendous toll. The last thing a patient needs or wants to deal with when recovering is an unexpected medical bill. Balance billing occurs when a health care provider bills a patient for the difference (the balance) between the provider’s charge for a service and the insurance plan’s payment for the service. The term “surprise medical bill” is used ...more
Arthritis Foundation-CARRA Transdisciplinary Research Grant Recipients

Arthritis Foundation-CARRA Transdisciplinary Research Grant Recipients

The Arthritis Foundation recently funded two new Childhood Arthritis and Rheumatology Research Alliance (CARRA) transdisciplinary research grants. Dr. Joyce Chang and Dr. Natoshia Cunningham have been awarded two years of funding for each of their projects. Dr. Chang’s project relates to care for adolescents with chronic rheumatic diseases as they transition to adult care. Dr. Cunningham’s study will examine cognitive behavioral therapy as a way for kids with childhood-onset systemic lupus erythematosus (cSLE) to manage fatigue, pain and depression. Joyce Chang, MD, MSCEChildren's Hospital of PhiladelphiaMeasuring Post-Transfer Outcomes and Building a Framework to Implement Structured Transition Processes Across Rheumatic Diseases This is the ...more
Live Yes! With Arthritis Podcast-Episode 2-Mindfulness

Live Yes! With Arthritis Podcast-Episode 2-Mindfulness

Living with arthritis can lead to major stress. Which can lead to more pain! It’s a vicious cycle that can leave you mentally and physically exhausted. Research suggests that mindfulness practices can help people living with chronic pain. But the idea of even practicing mindfulness and meditation to break that pain chain can be scary. In this episode, Rebecca and Julie learn how stress impacts our bodies and our brains. They explore simple ways to introduce mindfulness into arthritis care management. Dr. Nicole Reilly helps us understand how our bodies respond to pain and what we can do to break the cycle. ...more
Let’s Add an Out-of-Pocket Cap in Medicare Part D

Let’s Add an Out-of-Pocket Cap in Medicare Part D

My name is Andrea Penny Greenblatt, and I’ve had psoriatic arthritis for over 35 years. I’m also an Arthritis Foundation Advocate. About four years ago, I joined the Medicare program and faced unexpectedly high out-of-pocket costs on Medicare Part D. Last March, when I participated in the Arthritis Foundation’s Advocacy Summit, I told as many people as I could about my challenge. At that time, there wasn’t much anyone could do since no solutions were being discussed. But I’ve been reading about what Congress is now trying to do to cap out-of-pocket costs, and I wanted to share my story so ...more
Top Tips for Testifying at a Hearing!

Top Tips for Testifying at a Hearing!

In October, I joined forces with fellow Arthritis Foundation advocates to testify on step therapy reform. We traveled to the Massachusetts State House in Boston and shared our stories with legislators. Testifying at a bill hearing may seem intimidating, but here are my tips for making it less scary. Legislators want to hear from their constituents. They appreciate you taking the time to come and weigh in on a bill that matters to you. It if helps you, bring notes to reference. Remember, its impossible for legislators to know about every bill being debate, so it is our job to educate our ...more
Greyson Chess Keeps Plugging Away

Greyson Chess Keeps Plugging Away

This 10-year-old boy from Ohio won’t let arthritis stop him from having fun, because he knows he can handle it. Even when his juvenile arthritis is acting up and his joints hurt, Greyson Chess just keeps plugging away and rarely complains about his pain. An avid soccer player and skier, this active 10-year-old also enjoys lacrosse, basketball, snowboarding and going to the beach. During spring break earlier this year, he got to travel with his parents and two sisters, Ava and Piper, to Costa Rica. That might all be different if Greyson hadn’t responded so well to the treatment he’s been on ...more