July marks Juvenile Arthritis Awareness Month, a time dedicated to raising awareness about the unique challenges faced by children living with arthritis. While arthritis is often associated with older adults, nearly 300,000 children in the United States are affected by some form of juvenile arthritis (JA). This month serves as an opportunity to educate the public, support affected families, and highlight the vital work of organizations like the Arthritis Foundation and NORM in advocating for these young warriors. The Arthritis Foundation has many resources to support these young rheumatology patients.
Juvenile arthritis is an umbrella term used to describe various autoimmune and inflammatory conditions that can develop in children under the age of 16. The most common form is Juvenile Idiopathic Arthritis (JIA), which can cause persistent joint pain, swelling, and stiffness. Unlike adult arthritis, JA can also affect a child’s growth and development, making early diagnosis and treatment crucial.
Living with juvenile arthritis can be challenging for both children and their families. The condition can affect a child’s ability to participate in everyday activities, from playing sports to attending school. It can also lead to emotional and social challenges, as children may feel isolated or different from their peers, especially when they cannot join in something as simple as a game of tag on the playground. Children and their families face the burden of managing medical appointments, treatments, and the emotional toll of supporting a child with a chronic illness.
The Arthritis Foundation plays a pivotal role in supporting children with juvenile arthritis and their families. Through advocacy, research, and community programs, the foundation is dedicated to improving the lives of those affected by arthritis. Here are some of the key initiatives and resources provided by the Arthritis Foundation:
Advocacy and Awareness: The Arthritis Foundation works tirelessly to raise awareness about juvenile arthritis and advocate for policies that support research and access to care. By engaging with policymakers and the public, they aim to ensure that the needs of children with JA are recognized and addressed. NORM practices support the Arthritis Foundation in its advocacy endeavors.
- Support and Resources: The Arthritis Foundation offers a wealth of resources for families affected by juvenile arthritis. From educational materials to support groups and online communities, they provide valuable information and a sense of connection for those navigating the challenges of JA.
- Juvenile Arthritis Camps and Events: The foundation organizes camps and events specifically for children with JA, providing them with opportunities to connect with peers who understand their experiences. These programs offer a supportive environment where children can build confidence, make friends, and have fun. JA patients look forward to these camps, which are both fun and educational.
Many NORM practices participate in Arthritis Walks to help support the camps and events. If you have not participated in a walk, sign up for a local Arthritis Walk in a city near you!
Although many NORM practices do not treat pediatric patients, managers and their team do need to understand the challenges teens face as they transition to a new rheumatologist. This transition often coincides with going away to college. Treatment plans can be complicated and changes in lifestyle may affect the patient’s disease state. From scheduling infusions to coordinating self-injectables deliveries with specialty pharmacies, storage of drugs and keeping up with routine testing, there is a lot to manage. Here are a few great articles from the Arthritis Foundation with tips on how to navigate this transition.
In conclusion, JA patients face numerous challenges as they navigate treatment plans, insurance, and even simple daily tasks, which can be particularly challenging for them. NORM managers support these patients as they transition to our practice by recognizing and educating their team to work with these unique challenges. We are all stronger when we work together.
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