CRPS 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 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 Resources About CRPS and Associated Conditions

• Dr. Elliot Krane Chief of Pediatric Pain Management at Stanford’s Children’s Health (Retired)
  • Working with 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
• 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
    • What happens in the brain when I feel pain?
    • Acute vs. Chronic Pain
    • Physical Therapy and Pain
    • Psychology and Pain
  • Visit the Pain Management Center at Cincinnati Children’s Hospital website for general pain management information

• The Coalition Against Pediatric Pain (TCAPP) is a national non-profit committed to improving quality of life for children living with chronic pain from rare diseases.
• Ferocious Fighters is a not-for-profit organization dedicated to making sure kids, teens, young adults with CRPS, and their families, do not feel alone in their fight. Ferocious Fighters has mailed out close to 2500 care packages to kids with CRPS.
  • Learn more about them via 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
• Do You Suspect You or Your Child Has CRPS? Here is How to Self-Diagnose to Know if You Need to Seek Help

• AdvocacySD, an Educational Advocacy & Consulting company led by a CRPS Warrior, helps families that have students with special needs (including IEPs and 504s) get what they need from the K-12 school system and in a collegiate setting.