Ehlers Danlos Syndrome/EDS 🦓 “The issue is in the tissues”
Ehlers Danlos Syndrome is a connective tissue disorder that can affect all aspects of the body because collagen/connective tissue is in all organs and bones.
I have participated in over 150 hours of Ehlers-Danlos Society’s ECHO programs and over 30 hours in conference presentations. am also the only Doula listed in the Professionals Directory on the Ehlers-Danlos Society Website.
My family and I have EDS, Mast Cell Activation Syndrome/MCAS, and Postural Orthostatic Tachycardia Syndrome/POTS, and my dream is to support people living with these and other disabilities. I have been studying with the Ehlers Danlos Society in their ECHO program on a monthly basis since 2020. I conducted an EDS Reproductive Systems survey with Erica Evans in 2021/2022 which helped inform our practice around the support of clients with EDS.
Disability Doula/EDS Support
Patient Advocacy, Public Speaking, Reproductive, Pregnancy, Birth, & Postpartum Support
A Disability Doula is someone that provides support around things like acquiring diagnoses, appointment support and patient advocacy. This can look like helping prepare for an upcoming important appointment, accompanying someone to an appointment to help the person regulate themselves or focus on what they need out of the appointment, or it can look like walking someone through the steps of getting their official diagnoses for any number of issues. I am also a public speaker that can speak on educational topics around EDS, Patient Advocacy, Reproductive Systems and any combination of those topics.
Combining my Birth and Disability Doula Life
Since EDS affects any and all organs then you can understand why there can be a number of ways it can affect menstruation, fertility, pregnancy, birth and postpartum. Over the past 5 years I have developed a 16 page handout for my clients so they can learn how EDS can affect their pregnancy, birth, postpartum and parenting. The handout is currently being rewitten as a series of articles for Pregnancy, Birth, Postpartum and Infant Feeding.
How can I support you?
See the links on this page for handouts and zines I have written, informational websites, a few videos and at the bottom some scheduling links to book appointments with me that range from short informational sessions on the services I provide, to advocacy support in a number of ways like preparing and/or accompanying you to a medical appointment, or helping you acquire an official diagnosis you are seeking.
“My EDS journey….”
I discovered my family had EDS/Ehlers-Danlos Syndrome while researching POTS for a friend. Because POTS and EDS are comorbid, the description of EDS fit my family perfectly, what I’d always summed up as “my body is just not put together very well.”
EDS is a collagen disorder that can affect every body system. With 14 types, each EDSer is unique in how it shows up in their body and brain.
At 45, my doctor dismissed me, saying, ‘If you had EDS you would be dead by now.’ I left his care, found community, and eventually proper support—though medical care remains frustrating.
Living with EDS can be painful and destabilizing, but bellydance, swimming, and gardening help keep my ‘unstable sack of bones’ upright. I now proudly claim the label ‘Disabled’ and support Disabled people as a Full Spectrum Birth Doula.
My own birth journey was complicated by EDS, including severe SI pain that left me immobilized until a friend sent me an SI belt that helped me walk again.
Ziah’s Guides for People with EDS who are navigating Pregnancy, Birth, Postpartum and Infant Feeding
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Pregnancy and EDS
My Comprehensive Guide for my EDS Doula Clients about wide variety of ways EDS can affect Pregnancy.
Birth and Postpartum editions are being updated with the new research this Fall. This involves interviews, surveys and compiling the latest research. If you would like to support my work you can donate to
CashApp $ZiahMcK
Venmo @ZiahMcK
PayPal to paypal.me/awalim
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Infant Feeding Tips and Support for HSD/EDS Parents
4th EDITION NOW OUT
My PDF Guide for Infant Feeding Tips and Support for HSD/EDS Parents is in its 4th edition. This guide is created by EDSers for EDSers! I learn something new about what should be included with each survey, interview, and client so it is an ever evolving guide encompassing topics such as skin issues, joint pain, neurodivergence, POTS, GI issues and more!
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Midwife Rachel Fitz-Desorgher
FB Live Broadcast with Ziah and Rachel FitzD for 2025 EDS/HSD Awarenes Month
Webinar from Rachel Fitz-Desorgher about Pregnancy and EDS for the Ehlers-Danlos Society
Stretched to the Limits: A book for Supporting Women with Hypermobile Ehlers-Danlos Syndrome (hEDS) through Pregnancy, Labour, and Postnatally by Rachel Fitz-Desorgher
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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Support groups are the BEST!
The two types of support groups I personally utilize are:
The Georgia EDS & Hypermobility Network is AMAZING! You can access it by messaging the admins from the public page or send an email from here
You can learn if you have support groups local to you by looking in the Ehlers-Danlos Society directory
The Ehlers-Danlos Society also has a wide variety of types of virtual support groups for specific EDS types, parents, teens, guys, LGBTQIA+, etc….
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Did you know you can call the Ehlers-Danlos Society directly?
That’s right! They are available to help you on your journey, whether it is about seeking support for a diagnosis or for specific issues. Just call the number on this helpline page on their website.
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.
