Below are a few resources that have been helpful to me on my personal and professional learning journey.
EDS, MCAS, POTS, & Related conditions
Books:
Disjointed navigating the diagnosis and management of hypermobile Ehlers-Danlos Syndrome. This is a good book for both patients & medical clinicians. Written by a variety of clinicians who specialize in EDS and related conditions.
The Trifecta Passport tools for MCAS, EDS, & POTS by Amber Walker, PT
Living Life to the Fullest w/EDS A Guide to Living a Better Quality of Life While having EDS. Written by physical therapists who specialize in EDS.
Transforming Ehlers-Danlos Syndrome This book is from an Belgium EDS group with authors from a variety of countries. It is somewhat similar to Disjointed book listed above.
The Bendy Twisty Zebra (children’s book) A book geared towards children written by Kimby Maxson, a massage therapist & mother of a child with EDS.
Never Bet against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Lawrence B Afrin, MD
The Dysautonomia Project: understanding the autonomic nervous system for physicians & patients written with one page for patients & a corresponding page on the same topic for clinicians.
Videos:
The Ehlers-Danlos Society You Tube -past conference/ presentation videos
Dysautonomia International You Tube -past conference/ presentation videos
Jeannie Di Bon You Tube -Movement for hypermobile bodies
Podcasts:
Bendy Bodies -conversations with specialists with diverse areas of expertise answer questions you didn’t even know you had covering topics relevant to everyone with symptomatic joint hypermobility. Learn how to optimize your hypermobile health! Host Linda Bluestein MD. Topics include EDS/ Hypermobility, Mast Cell Conditions, Dysautonomia, Pain, and more.
Hypermobility Happy Hour hosted by Kerry, an attorney passionate about spreading awareness about hypermobility conditions including hypermobile Ehlers-Danlos Syndrome. Guests on the Hypermobility Happy Hour have included world renowned physicians in the field of hypermobility conditions, advocacy experts, individuals living with hypermobility conditions… Topics include EDS/ Hypermobility, Mast Cell Conditions, Dysautonomia, Pain, and more.
The POTScast Learn about Postural Orthostatic Tachycardia Syndrome (POTS). Gain insight from other patients and from top POTS practitioners. Includes discussion on POTS, but also commonly co-occuring conditions such as MCAS.
Unraveled: Understanding Complex Chronic Illness with Drs. Kaufman and Ruhoy
Websites
The Ehlers-Danlos Society - A plethora of resources on EDS including the different types of EDS, Journal articles, & a past Conference presentations
hEDS Diagnostic Checklist 2017 -A one page summary of how hypermobile EDS is currently diagnosed.
EDS Awareness/ Chronic pain partners -Resources specifically for patients including local support groups, patient guides, newsletters, recent articles, and presentations/ webinars from healthcare professionals and patient advocates in the area of EDS.
The Zebra Club: Movement therapy for EDS & hypermobility (app) A friendly and supportive community for people around the world living with chronic pain caused by Ehlers-Danlos Syndrome (EDS) or hypermobility. Here we’ll guide you through a journey of safe rehabilitation and exercise, so you can live your best life every day. Created by Jeannie Di Bon
Journal articles on EDS & Neurodivergence a compilation of journal articles from the group called: Symptomatic Hypermobility Ehlers-Danlos NeuroDivergent Syndromes in Sussex & Beyond
Oh Twist! - On Ehlers Danlos Syndrome, Mast Cell Diseases, & Dysautonomia by Jan Groh (writer, advocate, and someone living with EDS)
A patient’s guide to Cervical Spine Instability a guide compiled by EDS Awareness/ Chronic pain partners
The Ehlers-Danlos syndromes (EDS) GP Toolkit - A guide for primary care providers/ general practitioners “GP” but also a helpful guide for patients. This was created by The Ehlers-Danlos Support UK.
EDS ECHO Program for clinicians interested in expanding their knowledge on Ehlers Danlos Syndrome.
The Mast Cell Disease Society -Information on a variety of mast cell diseases
Mast Attack: Educating people about life with mast cell disorders. A website by a scientist living with systemic mastocytosis.
Hell’s Bells and Mast Cells: Raising awareness about MCAS, EDS, and dysautonomia one laugh at a time. Website by Keeya, an advocate living with MCAS and other related conditions.
Dysautonomia International -a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs. Their website has resources for both patients & clinicians.
Standing up to POTS -a non-profit that aims to improve the quality of life for people with POTS through research, advocacy, and support. Their website has resources for both patients & clinicians.
The Dysautonomia Project resources on dysautonomia for patients & clinicians. Creator of the book “The Dysautonomia Project”
POTS Provider Course: The comprehensive guide to evaluation and treatment of postural orthostatic tachycardia syndrome (POTS) in rehab by Emily Rich Occupational Therapist (appropriate for clinicians outside of rehab professions as well, such as APRN, MD, RD, etc.)
Mast Cell Disease Alert Card from The Mast Cell Disease Society
Ehlers-Danlos Alert Card from The Ehlers-Danlos Society
Articles (mostly academic/ journal articles):
Hope for Hypermobility by Daylor, Gensemer, Norris, & Bluestein 2023
Hypermobile Ehlers-Danlos syndromes: Complex phenotypes, challenging diagnoses, and poorly understood causes by Gensemer, et al., 2020
Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States by Estrella & Frazier, 2023
Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes by Halverson, Penwell, & Francomano 2023
Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations by Russek, Block, et al., 2023
Craniocervical Instability in Ehlers-Danlos Syndrome -A Systematic Review of Diagnostic and Surgical Treatment Criteria by Lohkamp, Marathe, & Fehlings, 2022
Effects of compression garments on balance in hypermobile Ehlers-Danlos syndrome: A randomized control trial by Benistan et al., 2023
The association between muscle strength and activity limitations in patients with the hypermobility type of Ehlers-Danlos syndrome: the impact of proprioception by Scheper et al., 2017
EDS Classification Updates in the American Journal of Medical Genetics March 2017 -Articles on hEDS, Rarer EDS types, and Common Co-occurring Conditions (2017 is the most up to date EDS Classifications as of 2023)
Perioperative Care in Patients with Ehlers Danlos Syndrome by Chopra & Bluestein 2020
Perioperative Considerations in Mast Cell Activation Syndrome by Hubbard & Wolfe 2023
Millions have the same ‘bendy body’ disease as my daughter. Why isn’t the medical profession paying more attention? CNN Article January 2023 by Sarah Lazarus
Diagnosis of mast cell activation syndrome: a global “consensus-2” by Afrin, Ackerley, Bluestein, et al., 2020
Mast Cell Disorders in Ehlers-Danlos Syndrome by Seneviratne, Maitland, and Afrin 2017
Characterization of Mast Cell Activation Syndrome by Afrin, Self, et al., 2017
More journal articles on MCAS (link to a google doc list)
Exercise and Non-Pharmacological Treatment of POTS by Fu & Levine, 2018
Non-Pharmacological and Pharmacological Management of Cardiac Dysautonomia Syndromes by Lei et al., 2020
Pharmacotherapy for Postural Orthostatic Tachycardia Syndrome by Miller & Raj, 2018
Neurodivergence
Books:
Divergent Mind: Thriving in a World That Wasn't Designed for You
Neurotribes: The Legacy of Autism and the Future of Neurodiversity
Loud Hands: Autistic People, Speaking
ADHD 2.0: New Science and Essential Strategies for Thriving with Distraction
Order from Chaos: The Everyday Grind of Staying Organized with Adult ADHD
The Neurodivergent Friendly Workbook of DBT Skills
Videos:
Yo Samdy Sam - exploring autism & neurodiversity
Purple Ella -autism, adhd, & more
Autistic burnout with Amelia Nagoski co-author of the book Burnout
Podcasts:
Websites:
Neuroqueer Essays by queer autistic scholar Dr Nick Walker
Neurodivergent insights by Dr Megan Neff an Autistic-ADHD psychologist -resources on autism, adhd, & more from a neurodivergent affirming lens.
Articles:
Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain by Csecs et al., 2022
Autism in Adulthood journal Academic journal that is neurodiversity affirming
LGBTQ+ Healthcare
The Remedy: Queer and Trans Voices on Health and Health Care (anthology) The Remedy invites writers and readers to imagine what we need to create healthy, resilient, and thriving LGBTQ communities. This anthology is a diverse collection of real-life stories from queer and trans people on their own health-care experiences and challenges… The book also includes essays by health-care providers, activists and leaders with something to say about the challenges, politics, and opportunities surrounding LGBTQ health issues.
The Care We Dream of: Liberatory & Transformative Approaches to LGBTQ+ Health (anthology) Through a series of essays (by the author and others) and interviews, this book offers possibilities--grounded in historical examples, present-day experiments, and dreams of the future - for more liberatory and transformative approaches to LGBTQ+ health and healing. It challenges readers to think differently about LGBTQ+ health and asks what it would look if our health care was rooted in a commitment to the flourishing and liberation of all LGBTQ+ people.
Beyond the Gender Binary Alok Vaid-Menon challenges the world to see gender not in black and white, but in full color. Taking from their own experiences as a gender-nonconforming artist, they show us that gender is a malleable and creative form of expression. The only limit is your imagination.
Supporting Transgender Autistic Youth and Adults: A guide for Professionals and Families A book by a therapist who identifies as neuroqueer, “this book provides advice on how professionals working with autistic trans youth and adults can tailor their practice to best serve their clients and how parents can support their trans autistic children, this book increases awareness of the large overlap between trans identities and autism.”
Queer CME - A great resource for clinicians wanting to provide more affirming care to their trans and gender diverse patients. Resources on gender affirming medical care including visit note templates, webinars, and more! Created by a queer nonbinary medical doctor who also founded QueerDoc, an online medical practice for gender affirming care.
Resources for LGBTQ+ Patients from the Human Rights Campaign
OutCare LGBTQ+ Community Healthcare Resources a resource directory by state + LGBTQ+ affirming provider search feature.
Everywhere is Queer Map a directory of queer owned businesses of all types, including healthcare/ wellness
Disability & General Chronic Illness Resources
Disability Visibility: first-person stories from the twenty-first century an anthology edited by Alice Wong It sheds light on the experience of life as an individual with disabilities, as told by none other than authors with these life experiences
The Invisible Kingdom: Reimagining chronic Illness book by Megan O’Rourke A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether.
The Long Covid Survival Guide: How to take care of yourself and what comes next The first patient-to-patient guide for people living with Long COVID--with expert advice on getting diagnosed, dealing with symptoms, accessing resources and accommodations, and more.
JAN -Job Accommodations Network Resources about job accommodations, accommodations you can ask for based on condition, your rights, employers responsibilities, and more
Long Covid Resource Center by Health Rising
The Science of HeartMath - Heartmath website. Using biofeedback to manage stress and improve autonomic nervous system function.
The Rest Room (podcast) a place to explore what it means to live (and live well) with chronic illness.
Goblin Tools a website with multiple tools including breaking down a task into smaller steps, giving an estimate on how much time a task may take, and more.
Other Favorite Books
A Beginners Guide to Evaluating Research booklet
Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness
Burnout: The Secret to Unlocking the Stress Cycle
Getting to Center: Pathways to Finding Yourself Within the Great Unknown
Soberful: Uncover a Sustainable, Fulfilling Life Free of Alcohol
This Naked Mind: Control Alcohol, Find Freedom, Discover Happiness & Change Your Life
Breath: The New Science of a Lost Art
Body by Breath: The Science and Practice of Physical and Emotional Resilience
I share more educational content over on instagram & facebook and include additional resource links related to that content here.
Disclaimer: The above resources are listed as I have found them helpful to my own learning and others may also find helpful. I cannot vouch for all content included within each listed resource. Our understanding continues to expand with further scientific research and I will update this list accordingly. If you have a concern with an item listed, please let me know. These resources should not be construed as medical advice; it is recommended to consult your own licensed healthcare provider before making any changes. ~Tasha
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