Parents of children diagnosed with systemic juvenile idiopathic arthritis (SJIA) commonly say that connecting with another SJIA parent is helpful and comforting. There’s something meaningful about finding someone who understands.
Meet four parents who have children with SJIA. Their kids have had SJIA for a while, so they have broad experience and valuable perspectives. These parents understand the uncertainties, the challenges, the doubts, the heartbreak, as well as the successes, hopes, improvements and positive changes (yes, they do happen!).
They have volunteered to talk to parents dealing with a new diagnosis or others in need.
They look forward to hearing from you. They want to help.
Colleen is the mother of 17-year-old Caitlyn, who was diagnosed at age 3. They live in Long Beach, CA. READ MORE
Amanda is the mother of 10-year-old Chloe, who was diagnosed at age 6. They live in Jackson, MS. READ MORE
Amber is the mother of 8-year-old Emily, who was diagnosed at age 5. They live in Washington, DC. READ MORE
Greg is the father of 13-year-old Emily, who was diagnosed at age 8. They live in Fort Collins, CO. READ MORE
Here’s what you need to know about our volunteer parents:
They are good listeners and are willing to share some of their experiences, as well as general knowledge of life with SJIA
They are parents, not medical experts, and will not provide guidance for your child’s medical care
They have been involved with the Arthritis Foundation in different ways and have met many parents and families over the years. That means they can share what they’ve learned from connecting with a broad range of people
They can provide helpful resources for information and connection to the larger community of parents of children with SJIA and other types of juvenile arthritis. For example, they can refer you to the many Arthritis Foundation resources for disease and lifestyle education, community-based and national events–excellent opportunities for in-person education and connections–as well as online support
They can also share suggestions for a broad range of sites for online connections with others