Resources to Start Learning about EDS, POTS/Dysautonomia and MCAS
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Hypermobile Ehlers-Danlos Syndrome/hEDS Criteria Checklist from the Ehlers-Danlos Society
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Criteria List of the 14 Types of EDS
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A GP/PCP toolkit from the Ehlers-Danlos Society
A General Practitioner/Primary Care Physician toolkit from the Ehlers-Danlos Society to share with your care team so that they can learn how to be an ally and possibly grow into an expert
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The Link between EDS and MCAS
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H1 and H2 What?: All About MCAS Treatments
The most inclusive and detailed information I have read about the full range of treatments for Mast Cell Activation Syndrome (MCAS), from standard allergy meds to immunotherapy
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POTS/Dysautonomia and EDS
An overview from the Ehlers-Danlos Society
A presentation from Dr Howard Snapper to learn the wide variety of ways that Dysautonomia can affect the body and brain
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Bendy Bodies Podcast
Such a great podcast about living with EDS, containing the best interviews from professionals supporting all kinds of aspects of how EDS affects us.
https://www.bendybodiespodcast.com/
I recommend starting with this episode, number 86, that talks about how to moderate your expectations from your healthcare providers and how to cultivate them as allies
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Pregnancy and EDS
My Handout for my EDS Doula Clients about how EDS can affect Pregnancy
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Infant Feeding Tips and Support for HSD/EDS Parents
My PDF Handout for Infant Feeding Tips and Support for HSD/EDS Parents is at the button at the top of my page on for EDS Pregnancy, Birth and Postpartum
Definitions and Link from my May 2025 HSD/EDS Awareness Month Campaign
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EDS
The abbreviation for Ehlers-Danlos Syndrome, a connective tissue Disorder. There are 14 types of EDS that have been identified, the most common is Hypermobile EDS, abbreviated as hEDS. The button below will take you to the Ehlers-Danlos Society website listing and description of all 14 types.
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HSD
The abbreviation of Hypermobile Spectrum Disorder. HSD is a different connective tissue disorder criteria than EDS. It is a primarily described as having joints that are unstable, but without the other issues that someone with any of the EDS types have. Unstable joints can cause widespread chronic pain and damage to joints.
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Connective Tissue
Tissue that supports, protects, and gives structure to other tissues and organs in the body. Connective tissue also stores fat, helps move nutrients and other substances between tissues and organs, and helps repair damaged tissue. Connective tissue is made up of cells, fibers, and a gel-like substance. Types of connective tissue include bone, cartilage, fat, blood, and lymphatic tissue.
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Why Zebras?
Medical students are told when they hear symptoms to look for the most common answer, “When you hear hoofbeats, don’t look for a zebra, look for a horse”, in other words expect to find something common, not something out of the ordinary. The problem is that it has been discovered the EDS is not rare, just rarely diagnosed.
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Mast Cell Activation Syndrome (MCAS)
“Mast cells are a crucial part of the immune system, responsible for releasing chemicals like histamine, tryptase, and cytokines during allergic and immune responses. However, in individuals with MCAS, mast cells become overly reactive and release these chemicals inappropriately, even in the absence of allergens or infections. This results in chronic, widespread symptoms that affect multiple organs, including the skin, gastrointestinal tract, cardiovascular system, and nervous system.” Definition from an article by the EDS Clinic
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ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and, like Long Covid, is often triggered by an infection. People with EDS are more prone to ME/CFS.
At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, cure, nor FDA-approved treatments or drugs for ME/CFS, and patients often suffer for life.
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Long COVID
While many people recover from COVID-19, as many as half experience lingering symptoms six or more months after their initial infection. Long Covid is the patient-preferred term used to describe this experience of post-infection illness. Long Covid includes a broad range of symptoms that can be disabling, prevent recovery to pre-infection health, and thwart return to the workforce. People with EDS are more prone to suffer with Long COVID.
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Patient Advocate
Patient advocates can help you navigate the healthcare system. Advocates ask questions, do research, write down information, and speak up for you. They help you get the care and resources you need.
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Full Spectrum Doula
A full-spectrum doula is a community care worker who offers support to people during the full spectrum of pregnancy – from preconception, to birth, to abortion, to miscarriage, to adoption, to postpartum. The work if very similar to a patient advocate
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Midwife
Midwives have expert knowledge and skill in caring for women throughout pregnancy, birth, and the postpartum period. The role of the midwife is to offer care that respects the goals and choices of their patient. There are many types of midwives, you can learn more of their history in America through the link below…
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Gynecologic disorders in women with Ehlers-Danlos Syndrome
“The frequencies of incontinence complaints (59%), endometriosis (27%), dyspareunia (57%), and previous hysterectomy (44%) were higher than expected for a population with a mean age of 41 years. Incontinence could not be demonstrated objectively. Prolapse was diagnosed in 12 (29.3%).”
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Cranial Cervical Instability/CCI
Cranial Cervical Instability, also known as CCI, is a medical condition that occurs when the ligaments and connective tissues that support the head and neck become weakened or damaged.
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Postural Tachycardia Syndrome/POTS
Postural orthostatic tachycardia syndrome (POTS) is a common autonomic nervous system disorder (dysautonomia) characterized by an excessively fast heart rate and symptoms of lightheadedness upon standing.
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EDS & Autism/Neurodivergence
It is now widely understood that having EDS and being Neurodivergent often go together. Things like ADHD, Autism, co-occur very often with people with EDS. I have linked an article from and EDS clinic talking more about it and that has some more sources if you would like to learn more about it.
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How often is EDS diagnosed?
“Not rare, just rarely diagnosed” 1 in 300 people is the most recent guess at how common EDS is. But how often it is actually diagnosed is much harder to learn. One study had records between 1979 and 2017 listed “10 cases in a practice of 5000 patients” but there are not many studies or statistics published so it is hard to know. We do know that based on many studies that it takes an average of 15 to 20 years to get an official diagnosis.