July is Juvenile Arthritis Awareness Month

July is Juvenile Arthritis Awareness Month

An estimated 300,000 children or nearly 4 in every 1,000 youth in the U.S. lives with some type of chronic arthritis.  

Juvenile Idiopathic Arthritis (JIA) is the most common type of childhood arthritis. 

Juvenile Spondyloarthritis (JSpA), also known as Juvenile Spondyloarthropathy, is the medical term for a group of childhood rheumatic diseases, which cause arthritis before the age of 16 and may span through adult life. 

Why Awareness Matters

Raising awareness is the first step towards understanding and combating juvenile arthritis. Many people are unaware that children can suffer from arthritis, often leading to delays in diagnosis and treatment. Increased awareness helps:

  • Educate the public about the early signs and symptoms of JA.
  • Promote timely diagnosis and intervention.
  • Support children and families living with JA.
  • Foster a community of empathy and support.

Why Supporting Research Matters

Research is the cornerstone of progress in the fight against juvenile arthritis. By supporting and funding research, we can:

  • Uncover the causes of JA.
  • Develop more effective treatments and therapies.
  • Enhance the quality of life for affected children.
  • Ultimately, find a cure.

How You Can Help

Spread the Word: Share information about JA with your friends, family, and social networks.

Get Involved: BACK-OFF JSpA (Biologic Abatement and Capturing Kids’ Outcomes and Flare Frequency in Juvenile Spondyloarthritis) is currently recruiting participants.

Living with Juvenile Arthritis.

New Spondykids Coloring Book!

Did you know that coloring can be good for your health? Coloring books are more than just fun activities. They are also reported to have other health benefits such as promoting mindfulness, reducing stress, and improving motor skills. That’s why we’re excited to share our new Spondykids Coloring Book.

Storytime with Roz 2022

With a warm smile and comforting voice, Spondylitis Advocate Roz Tolliver returns for a new Storytime reading session of You Are Enough. Written by Margaret O’Hair and down syndrome advocate and viral sensation Sofia Sanchez, You Are Enough is a book about inclusion, regardless of how you look, where you live, or what you can or can’t do.

“ Because we are all beautiful, just as we are.” – Sofia Sanchez

The Notebook Brooke

The Notebook: A Mother’s Guide for Coping When Your Child Lives with SpA

Just as our kids look to us for help in acknowledging and processing their emotions, we need to look to others for support in coping with supporting a child with an autoimmune illness.

How to stay motivated while living with a Chronic Illness: By Andrew Roe

Life can present unforeseen challenges that we must adapt and adjust to maintain a balanced life. When an autoinflammatory illness enters the equation of life, it can create a mix of emotions that can leave one feeling scared, hopeless, and frustrated. But the good news is, you are not alone. Teens such as Andrew Roe are choosing to stay motivated and focused on the future ahead. Roe copes with a chronic illness, but refuses to be defined by it.

How can you stay positive and motivated about the future? Here are some tips Roe shared with SAA on how he stays motivated.

Motivation

Juvenile Spondyloarthritis (JSpA) and Juvenile Psoriatic Arthritis (JPsA) Webinar and Podcast

Watch our clinician focused webinar, Juvenile Spondyloarthritis (JSpA) and Juvenile Psoriatic Arthritis (JPsA) presented by Dax Rumsey, MD, MSc, FRCP(C); Pamela Weiss, MD, MSCE; and Matthew Stoll, MD, PhD, MSCS.. As the first of four topics covered in CAPES (Clinician and Patient Education Series), this webinar will discuss the spectrum and classification of JSpA and JPsA, imaging pitfalls, and the treatments and outcomes for disease management.

Your registration will provide you with access to a portal that includes this live presentation, as well as the on-demand recording of this program available July 29, a special podcast all about JSpA and JPsA, other resources, and more!

This webinar presentation is brought to you through a partnership with SAA, SPARTAN, GRAPPA, and NPF. CAPES consists of webinars and podcasts, specifically designed for physicians and patients, and focuses on the understanding, treatment, and management of spondyloarthritis and psoriatic arthritis.

Juvenile Spondyloarthritis (JSpA) and Juvenile Psoriatic Arthritis (JPsA) Webinar and Podcast

SAA has partnered with SPARTAN, GRAPPA, and NPF to develop and present CAPES (Clinician and Patient Education Series). This series of webinars and podcasts, specifically designed for physicians and patients, will focus on the understanding, treatment, and management of spondyloarthritis and psoriatic arthritis. 

 

Watch our first webinar in the series, Juvenile Spondyloarthritis (JSpA) and Juvenile Psoriatic Arthritis (JPsA). We will discuss the spectrum of JSpA and JPsA, the genetic risk factors, the symptoms, and the appearances of the diseases. In addition, we will provide tips on managing the disease and the role of diet and exercise as part of your overall treatment options. You’ll hear from patients and their families as they share their journeys, including the challenges, successes, and hopes. As an attendee of the live webinar, you’ll also have a chance to participate in a live Q & A session. There is no charge to attend this important educational webinar. Your registration will provide you with access to a portal that includes this presentation, as well as the on-demand recording, other program materials, resources, and more!

COVID-19 Vaccination and JSpA

The CDC recommends that everyone over the age of 12 should be vaccinated against COVID-19. But for adolescents living with a rheumatic disease such as juvenile spondyloarthritis, what are the risks and benefits? What other factors need to be considered? Pediatric Rheumatologist Dr. Pamela Weiss shares her insights.

Storytime with Roz

SAA Support Group Leader (Merced) Roz Tolliver reads Little Tree,  a warm, touching, and healing story about a tree that loses some of its branches in a storm. Little Tress provides an affirming and encouraging message for children who are facing a chronic illness or other life-changing condition.

“When you are asleep in the place of dreaming, wonderful getting better things can happen.

– Author Joyce C. Mills

Sick Kids in Love: A Facebook Livestream With Hannah Moskowitz

We spoke with author Hannah Moskowitz about her young adult fiction novel, Sick Kids in Love to discuss what it means to navigate life and love with an invisible illness.

“You have to be overcoming it [illness] or you have to be completely disconnected from it. God forbid it be an important part of your identity that you’re just living with.”

– Author Hannah Moskowitz

Treatment Strategies with Dr. Pamela Weiss

Dr. Pamela Weiss, MD MSCE discusses treatment strategies for children with peripheral arthritis and/or enthesitis.

Expectations and Evaluations with Dr. Pamela Weiss

Dr. Pamela Weiss, MD MSCE discusses expectations for initial evaluation and treatment of your child with axial arthritis.

Management and Complications with Dr. Pamela Weiss

Dr. Pamela Weiss, MD MSCE discusses pain and complications that arise during the management of spondyloarthritis.

Special Friends.

Education Brochures.

Our Juvenile Spondyloarthritis brochure will give you  all the information you need about the primary signs/symptoms and the various treatments and techniques to manage spondyloarthritis in children and teens. Available in both English and Spanish.