In this episode of Botanical Rebellion, I get personal and pull back the curtain on the gritty, tangled roots of Ehlers-Danlos Syndrome (EDS). What even is connective tissue—and why does it matter that it makes up nearly a third of your body? (Spoiler: it matters a hell of a lot.)
I’ll break down collagen, DNA coding gone wrong, and how mutations in your body’s structural blueprint can lead to chronic pain, hypermobility, and dysfunction from the inside out. I also open space for honoring patients, caregivers, and medical providers—calling on everyone to learn more, advocate louder, and show up with compassion.
This episode also explores:
- Common comorbidities like dysautonomia, POTS, and MCAS
- The importance of validation, self-advocacy, and community
- Resources like the Ehlers-Danlos Society, and Rodney Grahame’s quote on neglected patients
- And what it means to survive and thrive with a body that bends the rules
If you’ve ever felt like your body’s made of rubber bands and bad code, or you love someone who lives that reality, this one’s for you.
Disclaimer: The content shared in this episode is for informational and educational purposes only and should not be considered medical advice. I am not a doctor—just a well-researched, lived-experience advocate sharing what I’ve learned along the way. Always consult with a qualified healthcare provider for diagnosis, treatment, and medical guidance. I’m speaking from both science and personal experience, and every body is different.
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Genetic Testing Companies for EDS
- Invitae
Offers a comprehensive EDS panel covering multiple subtypes, including classic, vascular, kyphoscoliotic, and more. - Blueprint Genetics
Provides a 41-gene EDS panel, ideal for patients with a clinical suspicion or diagnosis of any type of EDS. - Mayo Clinic Laboratories
Offers an EDS gene panel analyzing 22 genes associated with EDS and related conditions. - GeneDx
Provides molecular confirmation of EDS diagnoses and risk assessment for family members. - Dante Labs
Offers a panel testing for over 45 genes known to affect collagen production and maintenance. - PreventionGenetics
Provides customizable EDS panels, allowing for testing of single genes or subsets.
Clinical & Advocacy Resources
- The Ehlers-Danlos Society
An international organization dedicated to patient support, scientific research, advocacy, and increasing awareness for EDS and hypermobility spectrum disorder (HSD). - Dysautonomia International
A nonprofit organization that seeks to improve the lives of people living with dysautonomia through research, education, and advocacy. - Mayo Clinic
Provides comprehensive information on EDS, including symptoms, causes, diagnosis, and treatment options. - Atwal Clinic
Specializes in genomic and personalized medicine, including expertise in EDS and connective tissue diseases. - edsvirtualcare.com
Educational Resources
- Genetics and Inheritance of EDS and HSD
Detailed information on the genetic aspects of EDS and HSD, including testing recommendations. The Ehlers Danlos Society - Mass General Hospital: Genetic Testing for EDS
Provides an overview of genetic testing options for EDS, tailored to different subtypes.
