Resources
Below is a collection of online resources that we've found helpful.
Organizations, etc.
iCanCope Pain Education
A chronic pain education resource just for youth, created by a team of healthcare professionals, researchers, and young people living with pain. Simple, easy to follow format.
School Toolkit for JHS and EDS
A free resources for teachers to support students with joint hypermobility syndromes. This website is a joint project by The Ehlers-Danlos Support UK and The Hypermobility Syndromes Association.
Power Over Pain Portal
A free website that offers immediate access to online resources to help manage pain. Available in English or French. For ages 12-18.
Guide to Chronic Pain in Students: An In School Resource by SKIP
Provided by SKIP (Solutions for Kids in Pain), this is a Canadian resource that offers practical suggestions for accommodations in school settings. It also features a worksheet designed to actively involve students in their own in-school pain management plans.
2023 Diagnostic Framework for Pediatric Joint Hypermobility
This is a new diagnostic framework that can be used to assess people from five years old through to biological maturity.
Invitae Genetic Testing
Our geneticist used the Invitae Connective Tissue test, priced at $250 USD, to provide legitimate genetic insights. Remember, novelty tests like 23andMe and Ancestry are for entertainment purposes only.
Social Media Resources
There are many amazing social media accounts discussing chronic pain, parenting kids with health conditions, school support, and more both from organizations and individuals. The helpful information and support we have found has been invaluable.
Check out who we follow on Instagram but here are a couple of accounts to get you started:
Cort Does Science
Cortney Gensemer, Ph.D., is a postdoctoral scholar specializing in Ehlers-Danlos Syndromes and related conditions at Norris Lab, MUSC. Her social media is full of valuable insights. Her dedication and passion not only inspire but also instill hope for Evan's journey.
Izzy Kornblau
Izzy is a Board Certified Genetic Counselor with hEDS and offers valuable perspectives through her YouTube video. She blends her personal experiences with scientifically supported information.
Updated February 2024