- You miss a lot of school and have trouble catching up
- You cannot complete your favorite activities – like sports, or riding your bike, or dancing
- You may get bullied at school because you do not know anyone else who has this
- Your parents mean well, but they keep you from doing things that you know you can do
- You go from doctor to doctor for tests, but nobody can or will tell you what is wrong
- You look for information online and you cannot understand what it means or it is so scary that it makes you cry
- You feel lonely because you cannot go to school events or parties or play dates
- You wonder if you will ever be able to grow up and start/finish college
- You have no one who understands what you are going through
- You just want to have a normal life and be like the other kids and that makes you upset
We built this youth section of the RSDSA website just for you. We will update it with news about the topic you worry about and care about. We will help you meet other youth who are dealing with CRPS. Some of the young people who are already part of the RSDSA family attend pediatric pain summer camps and have even started cool events to help pay for research and to help others with CRPS.
Please send us an email and let us know what you would like to see on this page and how we can help you feel like any other student.
Educational Videos About CRPS and Associated Conditions
- Dr. Elliot Krane Chief of Pediatric Pain Management at Stanford’s Children’s Health
- The Children’s Hospital of Orange County has lectures on Ehlers-Danlos Syndrome – The Geneticist’s Perspective by Neda Zadeh, MD and Chronice Pain in Children by Pradeep Chopra, MD.
- The Pain Management Center at Cincinnati Children’s Hospital Medical Center
- Visit the Pain Management Center at Cincinnati Children’s Hospital website for general pain management information
- Ferocious Fighters is a not-for-profit organization who “is dedicated to making sure that kids/teens/young adults with CRPS do not feel alone in their fight.” Ferocious Fighters has mailed out close to 100 care packages to kids with CRPS.
- Learn more on 9News
- Watch Samantha Strasser share her CRPS Story at the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo in East Meadow, NY in 2019
Tamra & Lexi Stern Talk About Fighting for a Finish
Tamra Stern talks about her family’s six-year journey of dealing with the medical establishment after Lexi’s snowboarding accident and development of CRPS at the age of nine. Lexi is currently in remission after being treated at Stanford’s Lucile Packard Children’s Hospital.