Blog Archives
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The Norris Lab GWS Study
Read more: The Norris Lab GWS StudyThe Norris Lab, located in Charleston, SC, is a research lab that frequently hosts interns who have lived experience with disabling conditions and collaborate to gain perspective and advancements in the areas of Ehlers-Danlos Syndrome (EDS) and cardiovascular disease. Several recently associated gene markers have shown promise for their relation to hEDS. Gene variants in…
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The HEDGE Study Update
Read more: The HEDGE Study UpdateThe Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study was initiated by The Ehlers-Danlos Society to examine the genes of over 1000 particpants around the world who have hEDS or HSD (Hypermobility Spectrum Disorders). It is the most extensive study involving over 85 counties with an aim to find a genetic cause of hEDS. An October 2025…
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The Journey to hEDS
Read more: The Journey to hEDSHypermobile Ehlers-Danlos Syndrome The first time I heard about EDS was when I was getting my POTS work-up from my electrophysiologist. He knew it was co-morbid with POTS and sent me to a renowned geneticist in Dallas, Dr. Wilson. He took a family history. My mother is known to bruise easily, but she is also…
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My Journey to Diagnosis
Read more: My Journey to DiagnosisThe Younger Years I have vague memories during childhood where the signs were there. Abdominal pain starting at 7 years old. Being covered in hives after running through a field at 8 years old. Party tricks with the extra bendy joints. Always feeling tired. Around 13 years old, I came down with mono (also known…