American Journal of Medical Genetics March 2017 EDS Special Issue articles:
The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes
USEFUL LINKS
The Ehlers-Danlos Society, including printable materials, handouts, and an emergency care wallet card
Connective Strength – good resource/handouts section as well journal section with short articles
National Institute of Health – Your Guide to Understanding Genetic Conditions – EDS
EDS Awareness, which includes patient guides and webinars on a variety of topics
EDS and CTD New England/MA Support Group – excellent for latest news and research
Inspire.com, an online EDS Support Group
Hypermobility Syndromes Association (UK)
Chiari & Syringomyelia Foundation
Osteogenesis Imperfecta Foundation
NORD Rare Diseases resources
The Zebra Club with Jeannie De Bon – Movement therapy for people with hypermobility
The Bendy Body Podcast with Dr. Laura Bluestein
Toni Bernhard: Turning Straw into Gold Blog and 3 Things the Chronically Ill Wish Their Loved Ones Knew
Navigating Healthcare as a Hypermobile Human (An online course that Metro DC EDS & HSD SG Organizers have not taken so have no views on it. The course was recommended by a PT who treats EDS people as the PT who created the course has herself hEDS.)
BOOKS
General Information
Symptomatic: The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders – Editors: Clair A. Francomano, Alan J. Hakim, Lansdale G.S. Henderson, Fraser C. Henderson Sr. (December 2023)
Selected Heritable Disorders of Connective Tissue and Disability – National Academies of Sciences, Engineering, and Medicine (2022) (Prepared for U.S. Social Security Administration to understand connective tissue disorders while reviewing disability applications.)
Transforming Ehlers-Danlos Syndrome: A Global Vision of the Disease – The Epigentic Revolution – Emergencies – Dr. Stéphane Daens with contributions from 30 specialists (2022)
Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders – Diana Jovin, Editor with contributions from 21 specialists (2020)
Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder – Claire Smith (2017)
Hypermobility, Fibromyalgia and Chronic Pain – Alan J Hakim MB FRCP, Rosemary J. Keer MSc MCSP MACP, et al. (2010)
Physical Therapy/Movement
Hypermobility Syndrome: Diagnosis and Management for Physiotheraprists – Rosemary J. Keer MSc MCSP MACP and Rodney Grahame CBE MD FRCP FACP (2003)
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life while Having EDS – Kevin Muldowny, PT and Kathleen Muldowny, PT (2015)
Hypermobility without Tears: Moving Pain-Free with EDS and Hypermobiity – Jeannie De Bon (2019)
Pilates without Tears: The 5-step no pain, no strain strategy to move and feel great – Jeannie De Bon (2016)
Living with EDS/Chronic Illness
Ehlers Danlos Syndrome Pain & Symptom Tracker: 90 Day Guided Journal / Daily Log Book for Pain Assessment and Medication
Graceful Strength: Living Resiliently with Ehlers-Danlos Syndrome – Zoë Jorna-Jackson (2024)
Holding It All Together When You’re Hypermobile: Achieve a Better Life Experience with EDS, POTS, and Joint Instability – Christie Cox (2022)
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers – Toni Bernhard (2018, 2nd edition)