RESOURCES
Along my hEDS diagnosis journey and now managing this condition I have a few books and informational resources I have found helpful.
hEDS Resources
Please take a look at books and websites that discuss Hypermobile Ehlers-Danlos Syndrome
This book covers FAQs, comorbidities and management. I have found it very useful to take to medical appointments.
Run, carefully but don't walk to Alex's website. Alex is an Osteopath that I connected with over TikTok and I have learnt so much through her and her fabulous community on Discord. Simply wonderful.
This UK based organisation has a helpline, support groups, forms, information and a lot more educational content including presentations. Both a free and membership organisation.
Jeannie is a pilates teacher and has developed a series of hEDS friendly gentle exercises with different levels of difficulty to help stretch AND strengthen the body. I have joined the app and found it very useful.
Pain Resources
Please take a look at books and websites that discuss chronic pain
This book covers pain and how to reframe your mindset to find a new way to feel and think about pain.
Pain UK is an alliance of charities providing a voice for people in pain
This book gives a new look at pain and tools to help cope and practice new ways of managing pain
This app provides tools and information for pain management and a new way to view pain