ARTHRITIS FOUNDATION HOSTS JUVENILE ARTHRITIS FAMILY WEEKEND TO HELP IMPACT CHILDREN’S LIVES …Event Underscores Research Updates, Quality of Life and Family Fun at Great Wolf Lodge
DALLAS – Juvenile Arthritis is one of the most common chronic illnesses affecting children, yet it often goes undetected or misdiagnosed when symptoms first appear. One North Texas family understands this first hand and they are making plans to learn more at the Juvenile Arthritis Family Weekend Sept. 28-30 at Great Wolf Lodge in Grapevine, Texas. This 2-night family retreat, hosted by the Arthritis Foundation, features educational and social activities for families who have a child with Juvenile Arthritis and offers youngsters a reprieve from hospital visits to be with others on the same medical journey.
Eight- year-old Rebecca Thiele, who was diagnosed with Juvenile Arthritis (JA) at age 3, and her parents are planning on attending the event to learn more about the latest research and resources available. The event will also focus on how families deal with the everyday challenges of arthritis. Parents will also learn how fundraising support can make a critical difference to help improve their lives and find a cure.
The JA Family Weekend is held annually for families, like the Thieles, affected by Juvenile Arthritis other rheumatic diseases. Specific educational tracks focus on issues relating to parents, teens/young adults, children affected by arthritis and their siblings. In addition, the conference offers families a chance to network with each other and learn new techniques for managing juvenile arthritis and other rheumatic diseases.
More than 44 families from Oklahoma, as well as North, Central and West Texas, will attend the event with more than 110 children ages 1 to 17. This includes not only youngsters with arthritis, but also their siblings, cousins and friends who will join them for the family-fun activities.
“The JA Family Weekend allows me, my husband and Rebecca to get to know other families in our situation and bond with them,” said Stacy Thiele, Rebecca’s mother. “These people have become such a great support group all year round. We find it’s about making the personal connections, sharing our individual stories and getting to know each other. It is also extremely helpful to get medical updates on JA from the doctors, as well as new medications that are in trial. I think that is one of the most important aspects I take away from that weekend that I could not get on my own,” she added.
Rebecca was just a toddler when her parents knew something was terribly wrong. Her arthritis caused pain and swelling in her knees and other joints, as well as contributed to several other difficulties.
“She was having a lot of unexplained symptoms like limping when she walked, fatty tissue nodules on her wrist and neck bone, swollen fingers and she was unable to put her head back when we washed her hair,” said Thiele. “Rebecca also couldn’t walk for long distances so we always had to end up carrying her or bringing a stroller everywhere we went. She was extremely stiff and in pain in the mornings and she would cry when I dressed her, then she would lay on the couch or on her bed for several hours in the morning when we dropped her off at her caregiver’s house,” she added
After their daughter was properly diagnosed, Rebecca’s parents learned that Juvenile Arthritis is an umbrella term that refers to many autoimmune and inflammatory conditions that can develop in children ages 16 and younger Juvenile arthritis affects 300,000 children in the U.S. While there are many forms of juvenile arthritis, one common thread among them is that they can have a serious, even life-threatening impact on a young child. It’s important for caregivers to know the signs and symptoms.
“When joint pain, swelling or stiffness occurs in one or more joints for at least six weeks, it may be an early signal of a serious, inflammatory rheumatic disease that requires immediate medical treatment to prevent permanent joint damage,” says Susan Carter, Chief Executive Officer of the South Central Region.
“There has never been a more optimistic outlook for children with juvenile arthritis,” Carter adds. “Advances in research have produced new treatments that moderate the effects of juvenile arthritis. Early diagnosis and a proper treatment plan can enable a child with the disease to live an active, full childhood.”
About the Arthritis Foundation
The Arthritis Foundation (www.arthritis.org) is committed to raising awareness and reducing the unacceptable impact of arthritis, which strikes 1.8 million North Texans and is the nation’s leading cause of disability. To conquer this painful, debilitating disease, we support education, research, advocacy and vital community programs and services.