Helpful Books
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There are some amazing books out there to provide us with either a feeling of support or tangible advice to improve our health outcomes.
If you decide to purchase some of these books, please consider CLICKING HERE before purchasing (code is active 24 hours) to give our non-profit 3% - 15% of your purchase at no cost to you.
Chronic Illness and Disability
When the Body Says No: The Cost of Hidden Stress
This book addresses the cost of stress - which may worsen or cause chronic illness.
Demystifying Disability: What to Know, What to Say, and How to Be an Ally
"An approachable guide to being a thoughtful, informed ally to disabled people, with actionable steps for what to say and do (and what not to do) and how you can help make the world a more inclusive place."
Disability Visibility: First-Person Stories from the Twenty-First Century
This is a collection of powerful personal essays written by disabled persons and their experiences.
Who Do I Become When I Am No Longer Me?: Stories of Illness, Injury, Chronic Pain, Aging, and Dying
This collection of stories from chronically ill and disabled people are meant to inspire and offer insight to what their lives look like.
Disability Visibility (Adapted for Young Adults): 17 First-Person Stories for Today
This is a collection of powerful personal essays written by disabled persons and their experiences.
Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution
"Judy Heumann was only 5 years old when she was first denied her right to attend school. Paralyzed from polio and raised by her Holocaust-surviving parents in New York City, Judy had a drive for equality that was instilled early in life."
Read This to Get Smarter: about Race, Class, Gender, Disability & More
"An approachable guide to being an informed, compassionate, and socially conscious person today—from discussions of race, gender, and sexual orientation to disability, class, and beyond—from critically acclaimed historian, educator, and author Blair Imani."
Laughing at My Nightmare
This young man with spinal muscular atrophy discusses his everyday issues in a relatable, eye-opening, and humorous way.
Disfigured: On Fairy Tales, Disability, and Making Space
The author evaluates disability in fairy tales to understand how these portrayals affect our behaviour, expectations, and perceptions. She links these stories to the fight for disability rights and introduces stories that celebrate inclusivity.
About Canada: Disability Rights: 2nd Edition
This guide details the current rights and practices in place for PWD and critiques them, offering solutions.
Reconceptualizing Disability in Education
This book critically explores "problematic discourses, practices, and pedagogies that inform how disability is presently understood and responded to within the field of education." This book hopes to improve the experiences of PWD in educational contexts by clarifying inclusion.
Not So Different: What You Really Want to Ask About Having a Disability
This young man with spinal muscular atrophy discusses common questions he is asked about living with a disability.
Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness
"The Ultimate Guide to Sex and Disability is the first complete sex guide for people who live with disabilities, pain, illness, or chronic conditions. Useful for absolutely everyone, regardless of age, gender, or sexual orientation, the book addresses a wide range of disabilities -- from chronic fatigue, back pain, and asthma to spinal cord injury, hearing and visual impairment, multiple sclerosis, and more."
Unstoppable: Women With Disabilities
This book explores 10 disabled women's stories and their accomplishments in improving the world.
Ehlers-Danlos Syndrome and Hypermobility
*Books published prior to the new 2017 hEDS criteria have been generally left out of the list below.
Too Flexible to Feel Good: A Practical Roadmap to Managing Hypermobility
For patients, yoga teachers, fitness instructors, and physicians.
Includes: diet, sleep, exercises, anxiety mgmt., practical tips, and proprioception.
A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending without Breaking (2nd edition)
*BOOK PUBLISHED BEFORE NEW CRITERIA*
Patients and physicians.
Help with recognizing and getting diagnosis, dealing with doctors, nutrition, osteopathy, pain mgmt. and more.
Disjointed
For patients and physicians.
21 chapters by specialists, 6 resource chapters
A Multidisciplinary Approach to Managing Ehlers-Danlos (Type III) - Hypermobility Syndrome: Working with the Chronic Complex Patient
For physicians or supportive family/friends as it explores a patient's daily life with EDS. Some medical information is provided.
Joint Hypermobility Handbook: A Guide For The Issues & Management Of Ehlers-Danlos Syndrome Hypermobility Type And The Hypermobility Syndrome
For patients and physicians.
Written by multiple EDS experts to guide the management of EDS.
Hypermobility Without Tears: Moving Pain-Free with Hypermobility and EDS
This is a step-by-step guide to moving pain-free with EDS and hypermobility by a specialist with EDS herself, Jeanne Di Dbon.
Vascular Ehlers-Danlos Syndrome: The Journey Begins
This David Malarky's life story and his journey to getting a diagnosis with Vascular EDS (vEDS).
Ehlers-Danlos Syndrome: Your Eyes and EDS Updated
For patients and physicians.
Written by an optometrist with EDS herself.
The Driscoll Theory: Newly Revised The Cause of POTS in Ehlers-Danlos Syndrome and How to Reverse the Process v2
For patients and physicians.
Written by multiple EDS experts to guide the management of POTS in EDS patients.
The Trifecta Passport: Tools for Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome
This is written by a Doctor of Physical Therapy and overviews the conditions and an overview of treatments and tools. It
dives into topics such as nervous system regulation, mold and other biotoxins, nutrition, exercise, detoxification, mental/emotional health and trauma, structural/musculoskeletal issues and the many underlying root issues (related to hormones, bacterial/viral load, gut health, etc.) that can trigger or exacerbate these conditions."
POTS and Dysautonomia
The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients
For patients and physicians, written by them. Includes diagnostic and treatment options.
POTS and Other Acquired Dysautonomia in Children and Adolescents: Diagnosis, Interventions, and Multi-disciplinary Management
For patients, physicians and parents. Is a scientific review of diagnosis, treatment and management of PoTS.
Anxiety and Dysautonomia: Do I Have POTS or Autonomic Dysfunction?
RELEASES SEPT 2022
Accessing the Healing Power of the Vagus Nerve: Self-Help Exercises for Anxiety, Depression, Trauma, and Autism
The Vagus Nerve is implicated in PoTS; therefore, getting a better understanding of the Vagus Nerve and how to treat it may improve PoTS symptoms.
Fatigue and Dysautonomia: Chronic or Persistent, What's the Difference?
RELEASES SEPT 2022
Addressing the fatigue behind dysautonomia which is important for patients and symptom management.
POTS - Together We Stand: Riding the Waves of Dysautonomia
This book was written by teachers, doctors, patients, parents, and counselors to get a comprehensive understanding of PoTS and dysautonomia. There are various treatments discussed, including alternative approaching, coping technique, non-medical strategies, and more.
The Trifecta Passport: Tools for Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome
This is written by a Doctor of Physical Therapy and overviews the conditions and an overview of treatments and tools. It
dives into topics such as nervous system regulation, mold and other biotoxins, nutrition, exercise, detoxification, mental/emotional health and trauma, structural/musculoskeletal issues and the many underlying root issues (related to hormones, bacterial/viral load, gut health, etc.) that can trigger or exacerbate these conditions."
Mast Cell Related Disorders
Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity
This book written by specialist Dr. Afrin is important for both patients and physicians to understand the basis behind MCAS.
Toxic
"Millions of people are suffering from chronic illnesses that, unbeknownst to them, are the result of exposure to environmental toxins and infectious agents such as mold and Borrelia, which causes Lyme disease." There is a MCAS chapter
Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome
"At 542 pages and referencing over 1200 academic articles, this book is the longest and most thorough resource on mast cell activation syndrome (MCAS) to date."
Low Histamine Vegan: TOTAL RESET
The only low histamine recipe book out there for vegans!
4-Phase Histamine Reset Plan, The: Getting to the Root of Migraines, Eczema, Vertigo, Allergies and More
"Millions of people suffer from allergies, migraines, skin issues, sleep disturbances, digestive ailments or anxiety due to undiagnosed histamine intolerance."
The Trifecta Passport: Tools for Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome
This is written by a Doctor of Physical Therapy and overviews the conditions and an overview of treatments and tools. It
dives into topics such as nervous system regulation, mold and other biotoxins, nutrition, exercise, detoxification, mental/emotional health and trauma, structural/musculoskeletal issues and the many underlying root issues (related to hormones, bacterial/viral load, gut health, etc.) that can trigger or exacerbate these conditions."
Gastroparesis
* Recipe books are not included here due to authors using ingredients that are often not "safe" for those with gastroparesis.
The Gastroparesis Healing Diet: A Guided Program for Promoting Gastric Relief, Reducing Symptoms and Feeling Great
Written by a nutritionist following interviews with gastroparesis patients.
Real Life Diaries: Living with Gastroparesis
This book chronicles the experience of 15 women living with gastroparesis.
Gastroparesis: A Roadmap for Your Journey
Written by a clinical pharmacist (and patient!) with gastroparesis to provide options for medical treatments.
Median Arcuate Ligament Syndrome
* As of Feb 2022, there are only two books written about MALS.
Median Arcuate Ligament Syndrome: Pathophysiology, Symptoms, Signs, and Management
For patients and providers, this book details MALS: pathology, breathing effects, diagnostic tests, treatments (both surgical and non-surgical), complications, and variants of the conditions.
Diary of Debilitating Events
A look inside the mind of a chronically ill woman with Median Arcuate Ligament Syndrome.