Houston Kicks Off the 2019 National Juvenile Arthritis Conference Today!

Houston Kicks Off the 2019 National Juvenile Arthritis Conference Today!

 Over 800 kids, teens, young adults and their families from across the country are landing in Houston, Texas, for the first of two National Juvenile Arthritis (JA) Conferences the Arthritis Foundation is hosting this year. This week’s conference will kick off our 35th annual gathering of JA families during JA Awareness Month, and offers a variety of events and informational program tracks focused on education, connecting with others and fun. Continue reading Houston Kicks Off the 2019 National Juvenile Arthritis Conference Today!

July Is JA Awareness Month: Help Give Kids the Chance to Feel Included

The school year is an opportunity to enjoy some of the best memories with friends. But for many kids with juvenile arthritis (JA) and other rheumatic conditions, being in school can sometimes bring feelings of isolation. Many kids with JA have never met a friend with the same diagnosis. They never get to take a break from a serious illness that’s often quite painful, makes the immune system go haywire and can be downright lonely at times.

Summer break, however, is another story! The Arthritis Foundation provides camp programs and our National Juvenile Arthritis Conference in two locations, giving kids with JA the experience of a lifetime and the chance to feel included. Meeting other kids with the same disease fosters courage and strength and teaches them how to advocate for themselves.

That’s why July is Juvenile Arthritis Awareness Month — a time when we put a spotlight on JA, so more people know what living with it is like. We also take the opportunity to encourage parents who suspect their child may have arthritis to consult a pediatric rheumatologist as soon as possible. Early diagnosis and treatment are the best bet for avoiding permanent joint damage and improving the chance of remission.

JA affects 300,000 families
An estimated 300,000 families in the U.S. face the major disruptions JA can cause, making the disease worth acknowledging and doing something about. More children battle JA than do those who have cystic fibrosis, juvenile diabetes and leukemia combined.

Juvenile arthritis and related diseases in kids have some things in common with adult arthritis, but they’re not the same. Typically, there’s joint pain, swelling, redness and warmth. Otherwise, the many types of JA affect different kids in different ways. They can involve the eyes, skin, heart, lungs and gastrointestinal tract.

JA can make it hard to do schoolwork or take part in social and afterschool activities. Many kids with JA feel misunderstood and isolated. Some are bullied. Read one teen’s short memoir about living with arthritis.

Also read about Carson and Laniese — two brave JA Warriors who are taking control of their challenges in ways that work for them.

What can you do to make a difference?

DONATE
Your support provides the resources families need to live their best life.

  • We host JA camps nationwide to bring kids together who understand each other and no longer have to feel alone.
  • Our National JA Conference, being held this year in Houston, July 18-21, and in Minneapolis, Aug. 1-4, will empower hundreds of families to take control of JA.
  • JA Power Packs help newly diagnosed children and their families get adjusted and connect with others for tips and support.
  • Watch our short video about Conquering Childhood Arthritis, which is among the Arthritis Foundation’s highest priorities. You’ll see what we’re aiming to accomplish through research.

CONNECT

  • Join our Live Yes! Online Community, where there’s a special thread for JA families to exchange challenges and tips, plus you can ask health experts your questions.
  • Our Live Yes! Connect Groups for JA Parents bring moms and dads together in person to share their troubles and triumphs, with more local groups forming all the time.

SHARE INSIGHTS

  • Consider signing for the PARTNERS registry, which needs people from diverse communities to participate in surveys, provide ideas and contribute to projects.
  • Clinical trials to advance JA research may be just a short drive away, so check for nearby studies and consider getting involved.
  • Watch this research video to learn how clinical trials work and the variety of roles you can play in JA research.

Ways to help raise awareness

Helping get the word out about juvenile arthritis and other pediatric rheumatic conditions will generate more support for research and resources.

  • Take to social media using the hashtag #StrongerThanJA. Tell everyone you know that you’re fighting JA and urge them to join you.
  • It’s a snap to add your snapshot to our photo pool — and automatically unlock a $5 donation from cheerity.com.
  • Share your story about the ups and downs of living with JA, which will inspire others to get behind our cause.
  • Dedicate a special JA Awareness Month donation in honor of yourself or a JA Warrior you love and care about.

 

Coming Soon to a City Near You: The 35th Annual National Juvenile Arthritis Conference

IN A WORLD… where everyday kids become WARRIORS and battle arthritis as the JA League!

All kids and young adults with juvenile arthritis and other rheumatic conditions are heroes —members of our JA League. Every day, these Warriors battle the challenges that try to hold them back. But in the end, WE WIN! Don’t miss the latest, greatest blockbuster, starring YOU — connecting with other JA superstars. Continue reading Coming Soon to a City Near You: The 35th Annual National Juvenile Arthritis Conference

Teen Memoir: “My Life Because of You”

Below are excerpts from a blog posted on Teen Ink by Lexus Isabel, age 16, of Toledo, Ohio. Her submission about living with childhood arthritis is part of a national site that gives teens the chance to publish creative work and opinions on issues that affect their lives. Soon after it posted, her blog was in the #1 spot for memoirs.

Lexus has supported the Arthritis Foundation for several years, including participation in Walk to Cure Arthritis and Jingle Bell Run. She has also attended JA camps and done media interviews representing the juvenile arthritis community.

Dear Juvenile Rheumatoid Arthritis,

You are the term that has been engraved into my soul since birth. You are genetic and you manipulate my immune system to think there is something wrong with my joints. My immune system attacks me, causing inflammation and pain.

You’re a 7-year-old girl with an innocent face, wincing in pain. You are the smell of antiseptic as she enters the infinite number of hospitals and doctors’ offices. You taste like the toxic medication that chokes the girl twice a day. You feel like the piercing needles penetrating her skin, tears racing down her face, the constant, throbbing pain that stole away her innocence.

Most of all, you are the sounds you cause. You’re the “Mommy, it hurts,” as I scooch down the stairs because I can’t take the pain. You’re a mother screaming, “Tell me what’s wrong with my baby!” You’re the taunts of the children. You are me.

I want to thank you for this. If I was not bound to you, I would not be the person I am. I’ve become a compassionate, stubborn, determined young lady who wears her heart on her sleeve. I want to change the world. I want to help people and see the impact I make. I have this dream because of what you put me through. I don’t want others to be put through this, so I will be a person who guides them through their journey.

Yes, I am grateful to you, but I would never wish you upon someone else. You are genetic. You could have sprung upon one of my sisters. I would gladly balance this burden upon my shoulders for them.

You’ve taught me the importance of family. When you took hold of my life, everyone was scared, especially me. They hid their fear, took my little hands, and we stood against you as a family. When you were finally given a name, my grandmother, Mimmi, dove into research. My aunt helped me with my first injection of medication. My parents were probably hit the hardest by you. I’m so lucky to have them because they have been so supportive along the way.

I questioned my Mimmi about why God would do this to me. I snapped at her, “If God is so great, if he really does love me, then why would he do this to me?” She looked down and grabbed my hand. “Because he knows you are strong enough.” At the time I was just a little girl who had grown up too fast. Now I’m a strong young lady who is still a little scared of the future, but I know I am strong enough. These words have guided me through my life.

Then one day, I heard these words: “I think we can say you are in remission.” I let out a shaky breath and a laugh. My joy spilled out of my eyes. For the first time in years, I felt like I could breathe. I was floating. You were the burden that weighed me down but let me go and allowed me to fly. My parents’ smiles radiated in my direction as we realized all the things that seemed impossible could now be achieved. You are a battle that I will continue to fight because I will always be their little trooper.

You can read the entire blog on Teen Ink.

World Juvenile Arthritis Day: Help Shine a Light on JA

Right now, somewhere nearby, there’s a child who longs to run and play and have the same kind of fun other kids his age are having. Who dreams about being pain-free without having to swallow a cocktail of pills, or feel the sting of injections, or go through hours of infusions at the doctor’s office. A kid who longs for an end to the trial-and-error approach of treating juvenile arthritis (JA) – seeing what works and what doesn’t, often with unpleasant side effects along the way. Continue reading World Juvenile Arthritis Day: Help Shine a Light on JA

JA Camps Make a Life-changing Difference for Kids With Arthritis

From Cooper Landing, Alaska, to the beaches of West Palm Beach, Florida, the Arthritis Foundation is proud to host camp programs for kids and teens with juvenile arthritis and related childhood rheumatic diseases. Besides providing a safe and secure camping experience for children and teens, some locations also offer family camps – an opportunity for the entire family to attend together. Continue reading JA Camps Make a Life-changing Difference for Kids With Arthritis

Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator

In 2018, the Arthritis Foundation launched its Live Yes! Connect pilot program for parents of children living with juvenile arthritis and other childhood rheumatic disease. In addition to providing emotional and social support, the program offers educational resources and seminars to help parents improve the quality of life for their children. Jessica Ward, whose 11-year-old daughter Mercy was diagnosed with JA at age 4, is the sole parent facilitator for the JA parent group in Columbus, Ohio. We chatted with her to hear her insights about the parent group, including benefits, future plans and the best ways to get involved.   Continue reading Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator

juvenile idiopathic research patient-focused meeting

Powerful Testimony at the 2018 JIA Patient-Focused Drug Development Meeting

Hundreds of patients and their families, FDA staff, industry leaders, and researchers convened in Washington, D.C. to participate in the externally-led JIA Patient-Focused Drug Development (PFDD) meeting on August 2, 2018. The meeting served as a kickoff event to the 4-day Arthritis Foundation JA Conference East. Juvenile idiopathic arthritis (JIA) is the most common type of juvenile arthritis (JA). In many children, it’s a life-long illness with a high risk of disease and treatment-related morbidity. There is no cure, and treatments for children are limited.

This meeting, which is part of our strategy to help find a cure for this serious disease, provided an opportunity for patients, patient advocates, and caretakers to talk about the symptoms and issues that matter most to them. JIA parents and their families shared information about the impact of JIA on daily life, the symptoms that are most challenging, experiences with currently available treatments and the need for new and different treatments.

JIA patients and their families were invited to attend in-person and via a live webcast. They shared their experiences by responding to a live poll and discussion questions. Three patients and nine parent panelists told stories about how JIA impacts their daily lives and discussed the wide range of treatments they have tried.

Continue reading Powerful Testimony at the 2018 JIA Patient-Focused Drug Development Meeting