Information about Living with CRPS/RSD — Just for Kids, Teens and College Students

CRPS/RSD can be especially scary for young people. Not only are you feeling a lot of pain but you have special problems that adults do not.

• You miss a lot of school and have trouble catching up
• You can’t do your favorite activities – like sports, or riding your bike, or dancing
• You may get bullied at school
• 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’s wrong
• You look for information online and you can’t understand what it means or it’s so scary that it makes you cry
• You don’t know anybody else who has this and you feel like a freak
• You feel lonely because you can’t go to school events or parties or play dates
• You wonder if you’ll ever be able to grow up and finish college
• You have no one who understands what you’re going through
• You just want to have a normal life and be like the other kids and that makes you sad and mad

We built this youth section of the RSDSA website just for you. We’ll be adding to it with news about the things you worry about and care about. We’ll help you meet other kids who are dealing with CRPS/RSD. Some of the young people who are already part of the RSDSA family have started walk-a-thons and other cool events to help pay for research and to help others with CRPS/RSD.

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 kid.

Educational  Videos About CRPS and Associated Conditions

• • Visit Children’s Hospital of Orange County to listen to 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
    • What happens in the brain when I feel pain?
    • Acute vs.Chronic Pain
    • Physical Therapy and Pain
    • Psychology and Pain
  • Please visit the Pain Management Center at Cincinnati Children’s Hospital website for general pain management information
  • Dr. Elliot Krane Chief of Pediatric Pain Management at Stanford’s Children’s Health
    • Working with a a child’s school to ensure success after a CRPS diagnosis
    • Visiting a Physician for the first time with a child affected with CRPS
    • Meeting with a physician who is unfamiliar with CRPS
    • Returning to School with CRPS
    • Accelerating a child’s recovery from CRPS

• Teen with pain condition wants to reach every kid with his disease Video – By Patrick Boland
• 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.
• Watch Samantha Strasser share her CRPS Story at the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo, East Meadow, NY