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.
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 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 first understood that my family had EDS/Ehlers Danlos Syndrome when I chanced across the definition while researching the condition POTS/Postural Orthostatic Tachycardia Syndrome for a friend. Since POTS and EDS are comorbid syndromes I ran across a description of EDS and all the pieces came together, it was a total description of my family. All my life I had always just said “my body is just not put together very well” and been a caretaker of family members with many conditions that confounded doctors and they encountered so much shame and trauma.
EDS is a collagen disorder and all systems of the body have structures made of collagen. This means there is no system that is not effected by EDS. The 14 types of EDS have varying genes that effected the body in many different ways and each EDSer is unique in the way it manifests in their body and brain.
My journey getting diagnosed was shaky as a 45 year old presenting my primary care physician with my family history and research articles. He actually rolled his eyes and told me “If you had EDS you would be dead by now.” Luckily I knew enough to leave his care and found a local support group plus was able to get a surprisingly quick appointment with a geneticist (not that a geneticist is required for a diagnosis, that is a myth doctors will tell you). My medical care has still been frustrating but with each year that goes by it seems there is more awareness, if not exactly education, in the medical field.
My journey having EDS has been horribly painful and frustrating, even to this day. The instability of my body from top to bottom, the brain fog, and the random stuff that can happen at the top of the all that, can wreck a person’s motivation and ability to go about daily life. I found Bellydance early in life as a gentle form of dance that helps keep muscles strong around my joints with no impact to damage them. That, plus swimming and gardening, are my go tos to keep my unstable sack of bones mostly upright. I have come to understand that I have a lot of internalized ableism and now proudly accept the label of Disabled. My greatest joy now is to support Disabled people in their reproductive journeys as a Full Spectrum Birth Doula.
My birth journey had complications that I now understand are because of EDS. The hardest was my SI/Sacro-Illiac pain that had me immobilized for over a month. My husband had to put a futon on the ground and help me sit up to pee. My Obstetrician had no idea what was wrong with me but I was immensely lucky that a friend in another state who was a physical therapist heard of my predicament (this was before FB) who called to explain what was going on and mail me an SI belt so that I could walk again.
Want to donate to my studies and volunteer work? I take time to share information and answer questions on my various social media platforms,, spend time weekly studying directly with the Ehlers Danlos Society ECHO program and doing independent research…all for free when I could be doing paid work. Donations help me be able to continue these studies and support work.
If you want to read more about the rise of Disability Doulas read this interview with my mentor, Stefanie Lyn Kaufman-Mthimkhulu, the founder of Project LETS. I first studied with Stephanie when I took her Birth and Disability course through BADT/Birthing Advocacy Doula Training.
We are so excited that Fourth Wing has reached the #1 Fiction Book on the New York Times Best Seller List! Rebecca Yarros and her family have EDS and so does her, now very famous, main character Violet! Read about how she wove her family’s Disability into the narrative of this amazing book in an interview with Health.com