Exploring the science, research, and lived experiences of complex chronic conditions through thoughtful, evidence-driven science communication.
| Platform |  | Pricing | Freemium | Publishes | Twice weekly |
|---|---|---|---|---|---|
| Issues | 226 | Founded | 3 years ago | Last Issue | 4 days ago |
| Active | |||||
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cortneygensemer.substack.comLatest Issues
How a genetic enzyme deficiency can lead to a cascade of connective tissue failures
Disclaimer: The views expressed here are my own and do not represent my employer or any affiliated organization.
The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that are due to defects in how...
You can’t be THAT sick if...
What does “sick” look like?
“You can’t be that sick if…”
Researchers just proposed a framework for "neuro EDS"
Disclaimer: The views expressed here are my own and do not represent my employer or any affiliated organization.
I recently brought up the topic of a “neuro” type of Ehlers-Danlos syndrome. While not formally recognized as a subtype...
Why I Struggle To Talk About Certain Conditions
And it might not be what you think
Disclaimer: The views expressed here are my own and do not represent my employer or any affiliated organization.
A First Look at Steroid Hormones in Women with hEDS
This blog was written in collaboration with Dr. Sarrah Hannon. Dr. Hannon is a patient researcher working on the biochemical phenotype of hEDS and HSD. She was previously a forensic toxicologist, but left their career to pursue a PhD in pha...
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Authors
The writers behind this newsletter.
I’m a scientist, science communicator, and chronic illness patient. My work spans genetics, molecular biology, and clinical research in complex chronic illnesses. I write about science and research, lived experience, and patient-centered science.
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