In the evolving landscape of Ehlers-Danlos Syndrome (EDS) literature, a range of books have emerged, offering insights, guidance, and solace to those navigating life with this complex condition. This article curates a comprehensive list of books dedicated to Ehlers-Danlos Syndrome, highlighting key resources that delve into various aspects of living with EDS, its management, and the latest research findings.

Introduction

Navigating the complex world of Ehlers Danlos Syndrome (EDS) can be a daunting journey, filled with questions about management, treatment, and everyday living. Fortunately, a wealth of knowledge exists within the pages of books written by medical professionals, experienced patients, and caring advocates. Whether you're newly diagnosed, a long-time member of the zebra community, or a supportive caregiver, literature on EDS can offer solace, education, and empowerment.

In the quest to provide a guiding light through the maze of information, we have curated a comprehensive list of books that tackle various facets of EDS and its associated conditions. From medical guides that delve into the intricacies of the syndrome to personal narratives that resonate with shared experiences, these books serve as invaluable resources. They provide practical advice on managing symptoms, understanding the medical underpinnings of EDS, and embracing the unique life it entails.

Each title has been selected with the intention of enhancing understanding, fostering community, and aiding in the pursuit of a better quality of life for those touched by EDS. Below, you will find a list of these works, thoughtfully compiled and presented in alphabetical order for ease of reference. May they serve as your companions on a path towards better health and greater understanding.

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The Best Books about Ehlers Danlos Syndrome

These books, each unique in its approach, collectively provide a comprehensive resource pool for the EDS community and its allies. They underscore the importance of knowledge, empowerment, and community support in navigating the challenges posed by Ehlers-Danlos Syndrome and its comorbidities.

1. Disjointed by Diana Jovin

Buy Disjointed here

"Disjointed" serves as an extensive 688-page compendium for individuals with hEDS/HSD and their healthcare providers. It navigates the challenges of diagnosing and treating these conditions, enriched with patient experiences and medical expertise spanning genetics, physical therapy, autonomic dysfunction, and pain management. It aims to foster early and comprehensive interventions, offering practical advice on various life aspects .

2. Joint Hypermobility Handbook by Dr. Brad Tinkle

Buy the Joint Hypermobility Handbook here

Crafted by Dr. Brad Tinkle, "Joint Hypermobility Handbook" stands as a pivotal guide for EDS/HSD individuals. Leveraging Dr. Tinkle's deep understanding of heritable connective tissue disorders, this book breaks down complex medical jargon into comprehensible insights. It is lauded for its clarity in explaining care strategies, making it an indispensable resource for patients and medical professionals alike .

3. Living Life to the Fullest with Ehlers-Danlos Syndrome by Kevin Muldowney

Buy Living Life to the Fullest here

Authored by Kevin Muldowney, this 400-page guide offers an in-depth exploration of EDS tailored for patients and physical therapists. It elucidates effective treatment modalities, joint subluxation management, and exercise recommendations, emphasizing injury prevention and functional training to enhance quality of life .

4. The Trifecta Passport by Amber Walker (2021)

Buy The Trifecta Passport by Amber Walker here

This insightful book presents tools for managing Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and Ehlers-Danlos Syndrome (EDS). Amber Walker combines her expertise and personal experience to guide readers through the interconnectedness of these conditions, offering strategies for a holistic approach to health.

5. Holding It All Together When You're Hypermobile by Christie Cox (2022)

Buy Holding It All Together When You're Hypermobile here

Christie Cox's work is a beacon of hope and a practical guide for individuals grappling with EDS, POTS, and joint instability. The book aims to empower readers with knowledge and strategies to improve their life experience, emphasizing self-management and resilience.

6. Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Lawrence Afrin (2016)

Buy Never Bet Against Occam here

In this groundbreaking book, Dr. Lawrence Afrin delves into Mast Cell Activation Disease (MCAD), exploring its role in chronic illness and medical complexity. The book illuminates the intricate ways in which MCAD intersects with conditions like EDS, offering invaluable insights for patients and healthcare providers alike.

7. Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome by Amber Walker (2019)

Buy Mast Cells United here

Expanding on her work in "The Trifecta Passport," Amber Walker offers a holistic view of MCAS. This book is a comprehensive resource for understanding MCAS's complexities and developing strategies for managing symptoms in concert with EDS and POTS.

8. The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Freeman, Goldstein & Thompson (2015)

Buy The Dysautonomia

A collaborative effort between patients, physicians, and educators, "The Dysautonomia Project" aims to bridge the knowledge gap in autonomic nervous system disorders, including those related to EDS. It's an essential read for both healthcare professionals and patients striving for a deeper understanding of dysautonomia.

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Books about Ehlers Danlos Syndrome for Children and Young Readers

• Bendy Wendy and the (Almost) Invisible Genetic Syndrome by Brad Tinkle: A relatable story for tweens diagnosed with EDS/joint hypermobility.
• Ezra the Zebra by Dr. Louise Lightfoot: An engaging tale of Ezra, a zebra living with Ehlers-Danlos Syndrome.
• My Bendy Body by Michelle O'Sullivan: A colorfully illustrated book about the realities of living with hypermobility for children.
• Special Like Me... by Janelle L. Shannon LCSW: A narrative on the journey from diagnosis to acceptance, aimed at inspiring young EDSers .

More EDS Books for Adults

• A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome by Isobel Knight: A holistic view on managing EDS.
• Bending without Breaking by Isobel Knight: Insights on living with Ehlers-Danlos Syndrome Hypermobility Type.
• Broken: Living With EDS and Other Chronic Conditions by Marcia Brock and Cassandra Campbell: An inspirational story of resilience amidst chronic illness.
• Being Built Wrong: One Woman's struggle with Ehlers-Danlos Syndrome by Alexa Simmons: A personal account of navigating life with EDS .

Books about Mast Cell Activation Syndrome:

1. Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Lawrence B. Afrin: This book is a cornerstone in understanding the far-reaching impact of Mast Cell Activation Disease (MCAD), including MCAS, as a root cause behind many chronic illnesses. Dr. Afrin's extensive knowledge offers an eye-opening look into the complex nature of MCAS and its treatment.
2. The Trifecta Passport by Amber Walker (2021): Amber Walker shares her expertise on managing the interrelated conditions of Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and Ehlers-Danlos Syndrome (EDS). This book is a guide through the interconnected challenges, providing strategies for a holistic approach to health.
3. Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome by Amber Walker (2019): A continuation of her holistic approach to health, this book is a comprehensive resource for understanding the complexities of MCAS. It details strategies for managing symptoms in concert with EDS and POTS, reflecting Walker's deep understanding of these interwoven conditions.
4. My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders by Daniel Hodge: Daniel Hodge approaches the challenges of living with mast cell disorders with humor and candor. His personal anecdotes serve as both an educational tool and a source of comfort for those on a similar journey.
5. Understanding Histamine Intolerance & Mast Cell Activation by Mariska de Wild-Scholten: A guide that demystifies the symptoms of histamine intolerance and its relationship with MCAS. It provides strategies for managing diet and lifestyle to mitigate the effects of histamine.
6. The Driscoll Theory: Discovering the Cause of POTS in Ehlers-Danlos Syndrome by Diana Driscoll O.D.: Dr. Driscoll presents her theory connecting POTS, external communicating hydrocephalus, and MCAS with EDS. Her book is a must-read for patients and healthcare providers interested in the intersection of these conditions.

Books about Postural Orthostatic Tachycardia Syndrome (POTS):

1. The Trifecta Passport by Amber Walker (2021): Amber Walker shares her expertise on managing the interrelated conditions of Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), and Ehlers-Danlos Syndrome (EDS). This book is a guide through the interconnected challenges, providing strategies for a holistic approach to health.
2. The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Freeman, Goldstein & Thompson (2015)
3. The Driscoll Theory: Discovering the Cause of POTS in Ehlers-Danlos Syndrome by Diana Driscoll O.D.: Dr. Driscoll presents her theory connecting POTS, external communicating hydrocephalus, and MCAS with EDS. Her book is a must-read for patients and healthcare providers interested in the intersection of these conditions.

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The Complete List of Books about Ehlers Danlos Syndrome: 

1. Joint Hypermobility Handbook: Brad T. Tinkle - A guide for the issues & management of hypermobility.
2. THE HYPERMOBILITY MANUAL: June Corder - The ultimate guide on treatment and relief for EDS and hypermobility syndrome.
3. 21st Century Complete Medical Guide to Ehlers-Danlos Syndrome (EDS), Hypermobility: PM Medical Health News - A complete medical guide for EDS and hypermobility.
4. Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III)- Hypermobility Syndrome: Isobel Knight - Working with the chronic complex patient.
5. The EDS and Hypermobility Syndrome Diet: Lynne D. M. Noble - Dietary approaches to managing EDS.
6. ENabled warrior tracker planner journal for Ehler's Danlos Syndrome (EDS): Jessie Ace - Planner and journal for managing EDS.
7. Living Life to the Fullest with Ehlers-Danlos Syndrome: Kevin Muldowney PT - A guide to living a better quality of life with EDS.
8. Disjointed Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome: Diana Jovin (Editor) with - Navigating diagnosis and management.
9. Joint Hypermobility Handbook 10th Anniversary Edition: Brad T. Tinkle - Updated guide for EDS hypermobility type and hypermobility syndrome.
10. Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Isobel Knight - Bending without breaking, a guide to living with EDS.
11. EDS Survival Guide: Sonya Zappone - Five keys to thriving with EDS.
12. Hypermobility Without Tears: Jeannie Di Bon - Moving pain-free with hypermobility and EDS.
13. Too Flexible To Feel Good: Celest Pereira - Managing life with excessive flexibility.
14. The Trifecta Passport: Amber Walker - Tools for managing MCAS, POTS, and EDS.
15. Exercise with Ehlers Danlos Syndrome: Claire Hunter - Exercise guidance for individuals with EDS.
16. Joint Hypermobility Syndrome (Ehlers-Danlos): Dr. Christopher J. Maloney ND - Exploring the causes of pain in EDS.
17. Vascular Ehlers-Danlos Syndrome: M. J. Smith - Starting the journey with Vascular EDS.
18. Ehlers Danlos Syndrome Pain & Symptom Tracker: Banana River Press - A 90-day guided journal for tracking symptoms.
19. Unlocking The Secrets to the Hypermobility Puzzle: Dr. Marcia Perretto - Guide to understanding joint hypermobility spectrum disorders.
20. Ehlers Danlos Syndrome Journal: Ansart Design - Daily tracker journal for chronic pain and other symptoms.
21. BrOKen: Marcia Brock - Living with EDS and other chronic conditions.
22. Bendy Wendy and the (Almost) Invisible Genetic Syndrome: Brad T. Tinkle - A tween's diagnosis story of EDS/joint hypermobility.
23. Hypermobilities: Ellen Samuels - Exploring the spectrum of hypermobility.
24. EHLERS-DANLOS NO MORE: Jarrod Neto - Beginner's guide on managing hypermobility and EDS.
25. Ehlers-Danlos Syndrome - A Bibliography and Dictionary for Physicians, Patients: Philip M. Parker - A comprehensive reference for EDS.
26. Zebras of Hope: Ellen C. Kelleher - A personal narrative and guide to living with EDS.
27. I'm not Clumsy I have Ehlers-Danlos Syndrome: Collagen Free Designs - A journal for personal thoughts and tracking EDS challenges.
28. The Journey: Lynne D. M. Noble - A personal account of living with EDS and chronic pain.
29. Ehlers-Danlos Syndrome Remedy Guide: Dr. Kastin S. Eichmann - A detailed guide to EDS types, symptoms, diagnosis, and treatments.
30. If You're Hypermobile and You Know it Clap Your Feet: Collagen Free Designs - A notebook for those with EDS.
31. Ehlers Danlos Syndrome LogBook TRACKING OF CHRONIC EDS PAIN Birch: Birch Hester - Workbook for managing chronic EDS pain.
32. The Bendy Twisty Zebra: Kimby Maxson - A book on EDS awareness and management.
33. All My Ehlers Danlos Syndrome Shit: Kinsella Love - A 100-day log book for tracking EDS symptoms and managing chronic pain.
34. Your Knees Only Bend One Way?: Collagen Free Designs - An EDS syndrome notebook and diary.
35. What part of Invisible Illness Do You Not Understand?: Collagen Free Designs - A notebook for documenting life with an invisible illness like EDS.
36. Today I Will be Witty Charming Elegant and Only Trip: Collagen Free Designs - A humorous take on the daily life with EDS.
37. The EDS Recipe Book: Lynne D. M. Noble - A cookbook tailored for those with EDS.
38. EDS Medical Journal: Planner Emporium - A journal for tracking medical information related to EDS.
39. The Bradford Family Protocol: Mandrea Bradford - A holistic management approach for hEDS.
40. Accounts of HMS: Amy Fern Nuttall - Personal experiences with hypermobility syndrome.
41. EDS: P.D. Workman - A story from the medical kidnap files.
42. Hypermobility Pain Journal: Figgy - A journal for tracking pain and mood in hypermobility.
43. POTS and Other Acquired Dysautonomia in Children and Adolescents: Kelly McCracken Barnhill - A comprehensive guide on dysautonomia.
44. The Journey: Lynne D. M. Noble - Another account of living with EDS and chronic pain.
45. You Know You Have Have Hypermobility Syndrome (HMS) or Ehler: Hannah Ensor - An informative book on hypermobility syndrome.
46. A Sufferers guide to Ehlers Danlos Syndrome (type 3): Lynda Ward - Guidance for those suffering from type 3 EDS.
47. Foggy, Faint, Fatigued & Adrenaline: Dr. Chris O'Callaghan - Addresses symptoms of dysautonomia in EDS, focusing on adrenal responses and fatigue management.
48. Too Flexible To Feel Good: Celest Pereira (2021) - A practical roadmap for managing hypermobility, offering advice for better physical health and well-being.

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More Lists of Ehlers-Danlos Syndrome Books: 

1. Goodreads. Ehlers Danlos Syndrome Book List.
2. Mayo Clinic Connect. 4 Must-Read Books on EDS/HSD.
3. EDHS Info. Books about hEDS and HSD.
4. Oh Twist! Recommended Books.
5. Ehlers-Danlos Australia. EDS Books.

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