July is Juvenile Arthritis Awareness Month

25 Jun 2019 4:09 PM | Anonymous

Jenn, pictured above, was diagnosed with arthritis at just two years old. Her pediatric rheumatologist recommended yoga.

In our research, we have found that yoga decreases pain, improved mood, and bolsters quality of life for adults with arthritis. Less quantified, but perhaps more importantly, we have heard many stories describing how yoga can transform one’s relationship to the disease, to the body, to life with arthritis and even to life overall. While some of this transformation may happen in the natural course of living with arthritis, imagine growing up with arthritis--yes, from childhood--and with all of the tools of yoga right from the beginning.

The first research study I was involved with after undergrad was a sibling-donor cord blood program. When a family had a young child with a transplant-treatable illness and was pregnant with a second child, we facilitated cord blood collection at birth and, if the blood was a match, it was used for a transplant in the older child. I learned a lot during that project about the challenges of multi-site research, the importance of standard operating procedures, and the power of research to save lives. I also learned about the remarkable resiliency of children with chronic diseases.

In the decades since, I have been actively involved in Arthritis Foundation events targeted toward the 300,000 American children with arthritis and their families. July is Juvenile Arthritis Awareness Month. While most people are familiar with osteoarthritis, which increases in prevalence with age, injury, repetitive motion, and body weight, systemic forms of arthritis are more likely to emerge in middle-age or younger. In addition to these events, which focus on arthritis from birth to young adulthood, I’ve also worked with adults who have had arthritis since their youth.

One thing that strikes me about these children is their level of comfort with medical care and the healthcare system. While my 11-year-old daughter still cries in anticipation of an occasional vaccine and has to be held during the procedure, I recall very small children holding out an arm for a routine blood draw or the insertion of an IV needle as though it were nothing. This bravery strikes me as both remarkable and quite sad.

The other observation I’ve made about such children is the wisdom they carry, far beyond their years. Their illness has forced them to accept certain realities and challenges that most children will never consider, let alone endure. A friend in her early 30s who has had arthritis since age 2 told me that she was more prepared for aging than her peers because early in life she has already dealt with most of the physical and emotional ramifications of aging. 

The Arthritis Foundation did not always have mechanisms for bringing young people with arthritis together. A former student recalled that when she was diagnosed as a teen, she would have been grateful just to know that there was someone else out there like her. Today, there are many ways to do so. 

When I attend events for children with arthritis, I don’t just walk them through yoga poses with animal names. I teach them how changing their breathing can change their pain. I show them poses that can help them feel strong during challenges, I talk them through a relaxation practice that can help them with sleep and practices to use when they are feeling fatigued. I teach them about listening to their bodies, making choices that are non-harming, and replacing negative thoughts with positive ones. 

I once asked a middle-aged woman with rheumatoid arthritis why she hadn’t tried yoga sooner, because it had changed her life so profoundly. She responded that no one ever told her she could. Working with children is my way of showing them they can. They can practice self-care along with their medical care, and they can even teach their parents how to use these practices. 

Whether you are a yoga professional or an adult with arthritis, consider contacting your local Arthritis Foundation office to find out how you can serve kids with arthritis near you. I promise that you will learn more than you teach.

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