Resources for Ehlers-Danlos Syndrome

***At the suggestion of a friend I will keep two running posts to be updated randomly, this one, for educational resources, studies, etc and another of fellow bloggers and vloggers with EDS. Please let me know if any links are broken/nonfunctional!***

General Information:

• The Ehlers-Danlos Society is a great resource for information, guides, and awareness. They also have information to help with diagnostics, emergency information, and education for medical professional.
• NIH on EDS
• National Organization for Rare Disorders on EDS
• Ehlers- Danlos Syndrome C.A.R.E.S. Network
• RareConnect Forum for EDS
• Medscape Info with genetic and pathophysiologic information
• Compiled resources from OHTWIST Blog

Research:

• EDS Society Current Research
• Clinical Trials
• Vascular EDS Research partnered with C.A.R.E.S

Books for EDS and related conditions”

• Joint Hypermobilty Handbook by Brad Tinkle. He also wrote another book but it is very hard to get your hands on but can be found here. This is a very useful handbook covering common issues of EDS by body system. Great to share with healthcare providers or to just understand your body more.
• A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type) by Isobel Knight
• Living Life to the Fullest with Ehlers Danlos Syndrome by Kevin Muldowney PT. This book describes a physical therapy protocol by a well respected physical therapist.
• Special Like Me… Ehlers Danlos Syndrome by Janelle Shannon LCSW is a children’s book about a boy with EDS to help children with EDS cope. If you have Amazon, there is a free e-book avaliable.
• Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Lawrence Afrin M.D. I HIGHLY recommend this book to anyone diagnosed with a mast cell disorder, especially since it is a rather new condition and there is limited information out there. Afrin is one of the leading researchers/providers studying and treating mast cell disorders and his writing is thorough and easy to understand language (verified by people who aren’t me for those of you that snickered).
• POTS- Together We Stand: Riding the Waves of Dysautonomia by Jodi Epstein Rhum. I haven’t personally read this one but its on my list per recommendation by a friend.