Welcome to the
National - Ehlers-Danlos Syndromes JA Parent Connect Group
Yorba Linda, California
9 Members
Live Yes! Connect Groups for JA Parents provide local connections, education and empowerment for parents and caregivers with children living with rheumatic disease. JA Parents come together for professional and volunteer-led sessions on a variety of topics and group activities as it relates to raising a child with arthritis.
Participants gain skills to advocate for their child, help their child develop self-management skills and discover strategies for daily living. These groups are part of an expanding range of Arthritis Foundation resources that provides personalized help & support to parents who have a child/teen with a childhood rheumatic disease.
This Live Yes! Connect Group is led by a parent with 2 daughters with EDS Hypermobility Type and is looking to connect with other parents whose child/children have EDS.
Upcoming Events
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Sunday December 4th 2022
12:00 AM - through
-
Sunday December 4th 2022
12:00 AM
Get back to jingling and join the MOST FUN & FESTIVE holiday fun-run around – all to battle the #1 cause of disability!
- Event List
- Sunday December 4th 2022 12:00 AM
- through
- Sunday December 4th 2022 12:00 AM
Get back to jingling and join the MOST FUN & FESTIVE holiday fun-run around – all to battle the #1 cause of disability!
Facilitators [1]
Members [9]
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Connect Groups - National - Ehlers-Danlos Syndromes JA Parent
Comment
Comments [1]
Hi! My daughter and I are new here. We joined on the advice of our rheumatologist and are sharing one account for the moment. (She's only 17.) We both have Ankylosing Spondylitis and Hypermobile EDS. She also was diagnosed with celiac disease at 8 years old.
We come from a huge family, and nearly every one of us has some form of AS/hEDS/Crohn's/celiac. (Talk about terrible genes! Lol.) This creates a large support network for us, but Brooke is looking to branch out and meet new people like herself, especially as she has finally figured out that she wants to become a pediatric Occupational Therapist to help kids who are going through the same difficulties she has faced. I also need to connect with other parents like myself.
So...yeah. We're here and can't wait to get involved!