Dreaming Big: Juvenile Arthritis Conference
Over 300,000 children in the US live with juvenile arthritis (JA). They live with pain, physical limitations and social isolation, the disease affecting almost every aspect of their young lives. In addition to learning all the regular tasks of growing up, they also cope with medication and other treatment, doctors’ appointments and finding ways to cope with their JA. Once a year, kids, families and young adults have the opportunity to come together for The Arthritis Foundations Juvenile Arthritis Conference. This year, the 29th annual conference is held in Anaheim, CA, hosting 1200 people to learn more about juvenile arthritis and, most importantly, being with others who are just like them.
"We dreamed big," says Jennifer Ziegler, Program Director with The Arthritis Foundation’s Pacific Region. "The organizing committee worked really hard and went after what we wanted. We want families to know that if you're persistent and determined, you can make dreams come true." Their hard work shows in the scale and range of programming available at the conference.
The theme of this year's conference is Dream, Believe, Achieve. It involves programming for children and teens, both those who live with JA and their siblings, divided into 12 age groups ranging from 0 to 17 years old, each having their own schedule. There will be many breakout educational sessions on many aspects of juvenile arthritis for parents and young adults.
Participants can also use the "At the Doc" program where they can speak to a pediatric rheumatologist. This can be very beneficial for families who have trouble accessing specialists in this field, due to the shortage of pediatric rheumatologist in many states. Other professionals available to conference participants will include nurses and social workers.
The conference organizers made sure to include programming addressing the emotional aspects of living with JA. Jennifer explains that "social workers will offer a two-day session for teens on self-esteem and body image" and there will also be the opportunity to participate in anti-bullying groups. Organizers also included advocacy sessions as an important part of the conference to help create lasting skills involved in raising awareness about JA. Kids can learn "how to write legislators about having JA or being a sibling to someone with JA," Jennifer says. As well, teens will work together to produce a JA awareness video.
There are also many opportunities for kids and young adults to be together and just have fun. The Pacific Region’s JA camp is bringing the "camp to the conference," there'll be a bonfire on the beach and an Arthritis Awareness night at Disneyland, with free attendance and vouchers for food. On Sunday, the last day of the conference, the closing ceremony will include a parade featuring all the participants.
The organizing committee, composed of 30 Arthritis Foundation staff and volunteers, also made sure that if you cannot attend the conference, you can still be part of some of the programs. Several sessions will be streamed live on the Foundation website, including a Young Adult Panel, Advocacy Session and the JA Awards and Research. You can also connect on the JA conference Facebook page and the Pacific Region Twitter feed, as well as the Arthritis Foundation JA Conference website..
On a personal note, as someone who has lived with JA for 45 years, I am very happy to see what is now being done for kids living with this disease. So much is different about living with JA compared to when I was a child and it’s encouraging to hear about programs that can help kids cope and live much better lives.
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain