Recommended Resources
for Ehlers-Danlos Syndromes
& Associated Conditions
UK Physicians Ehlers-Danlos Toolkit
This toolkit has been developed in partnership between the RCGP Clinical Innovation and Research Centre and Ehlers Danlos Support UK led by Emma Reinhold and with contributions from Lisa Jamieson, Lesley Kavi, Kay Julier, Hanadi Kazkaz, Alan Hakim, Nikki Praiba, Gemma Pearce, Philip Bull and Jan Groh.
Understanding Hypermobile Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorder
A book frequently recommended by patients and clinicians, Claire Smith presents clear and concise answers to frequently asked questions when navigating Hypermobility Ehlers-Danlos Syndrome and related conditions.
ISBN: 978-1-9997300-0-0
Living Life to the Fullest With Ehlers-Danlos Syndrome
Introducing a systematic and adaptable approach, Kevin Muldowney's protocol has been helping patients and clinicians be informed and engaged in the physical management of Ehlers-Danlos Syndrome.
ISBN-13: 978-1-4787588-8-4
The Beginning of Everything: The Year I Lost My Mind and Found Myself
From New York Times best-selling author Andrea Buchanan, a chronicle of a year of physical and mental anguish as she shares her journey of experiencing a spontaneous cerebrospinal fluid leak.
ISBN 978-1-7438204-9-0
Disjointed
Diana Jovin (Editor) has created Disjointed for patients with hEDS/HSD and the physicians who treat them. hEDS/HSD is an underrecognized, complex, multisystemic disorder, with the silos of healthcare's specialties often working against an effective and efficient treatment. With 21 specialist & 6 resource chapters, Disjointed brings together physician, patients, and parent perspectives to support the goal of earlier and more complete intervention.
ISBN - 978-1-7347949-0-8
Never Bet Against Occam
Written for the general public, Dr. Lawrence B. Afrin aids patients navigate the complex and understudied area of "MCAS" - Mast Cell Activation Syndrome.
Categories of Resources
Select from the resources below, or suggest your own. Let us know what has been most helpful in your clinical or patient journey.
- Understanding Hypermobile Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorder - Claire Smith
- Living Life to the Fullest With Ehlers-Danlos Syndrome - Kevin Muldowney
- The Beginning of Everything: The Year I Lost My Mind and Found Myself - Andrea Buchanan
- Disjointed - Diana Jovin (Editor)
- Never Bet Against Occam - Dr. Lawrence B. Afrin
- Hypermobility Without Tears: Moving Pain-Free with Hypermobility and EDS - Jeannie Di Bon
- Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome - Brad T. Tinkle
- The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients - Kelly Freeman, David S. Goldstein, MD Phd Goldstein, Charles R. Thompson
- EDS Hub - Brainfog-friendly Patient Health Forms
- Flaredown - app and online symptom tracker
- Patients Like Me - an online symptom tracker
- Faces & Pain scale - in different languages
- Online McGill Pain Questionnaire
- Online Quality of Life assessment
- Importance & ways to collect family history
- Top Pain related Apps
- Recommended Chronic illness & Pain Apps
- Compilation of Orthopedic related forms
- The Dysautonomia Project - forms associated with the book
- Healthline is a well referenced health information site for patients
- Educational recordings by EDS experts, Help finding & setting up support groups.
- Patient-friendly Summary of EDS by the Arthritis Foundation, USA
- US National Library of Medicine linked information resources. Links to the Genetics Home references for multiple conditions including Ehlers-Danlos Syndromes, Loey-Dietz, Sticklers’, Marfans, and more.
- Basic summary by the American Academy of Allergy, Asthma & Immunology (AAAAI) regarding Mast Cell Activation Syndromes.
- The International Association for the Study of Pain (Patient resource list)
- International association for Suicide Prevention (List of curated emergency resources & organisations)
- UK Ehlers-Danlos Organisation. Helpful “living with EDS” sections such as how to manage subluxations, pregnancy considerations etc.
- International Ehlers-Danlos Society (Consortium of EDS Researchers)
- Hypermobility related organisation with strong self-management & clinician relationships aspects, UK
- International Marfans organisation (heritable connective tissue disorder)
- Mastocytosis Organisation - Information & Support
- Official website of the International Chiari Association (ICA).
- The CSF Leak Association is a registered charity in the UK, working to raise awareness of cerebrospinal fluid (CSF) leaks and associated conditions, such as intracranial hypotension.
- Official website of Dysautonomia International.
- The Dysautonomia Support Network: support, resources, education, and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation, and Gastric Motility Disorders.
- The Dysautonomia Project is a not-for-profit collaborative effort of hundreds of volunteer physicians, patients, and community leaders. Our aim is to bridge the wide knowledge gap between community-based physicians and decades of validated clinical research about Dysautonomia.
- Dysautonomia Youth Network of America, for childhood/adolescent/young adult onset dysautonomia conditions.
- Stanford University ME/CFS Initiative
- Physiopedia - Wikipedia for the physiotherapy profession - including courses
- Monash University, Melbourne, Australia. Includes Patient & Clinician Information, links to helpful Apps and Courses - relating to FODMAPS
- Royal Prince Alfred Hospital Allergy Unit, Sydney, Australia Resources on food intolerance
- Online resources from a Medical Practice and Resource centre for People with Ehlers-Danlos Syndromes
- Jan Groh one of the authors of the RCGP EDS Toolkit maintains a website dedicated to collecting confirmed and proposed features of EDS and associated conditions
- Mast cell activation website by Scientist-Patient Lisa Klimas. Well-referenced and states known & unknown.
- Project of Swiss Interest Group Histamine Intolerance (SIGHI). This website is aimed at offering people useful information on systemic mast cell activation diseases (MCAD). To be used in close collaboration with a treating physician.
