May is Ehlers-Danlos Syndrome (EDS) Awareness Month. I was born with hypermobility type EDS (hEDS). When I was a teen, I was diagnosed with hypermobility but I wasn’t diagnosed with hEDS until 2015. My physical therapist was the one who encouraged me to seek a diagnosis. Her father had a different, but somewhat similar, connective tissue disorder called Marfan syndrome. She recognized the signs of connective tissue disease in me when none of my other doctors or specialists even knew what hEDS was.
EDS isn’t actually rare, it’s just under diagnosed. Medical students are taught, “When you hear hooves, think horses, not zebras.” Thus, the EDS mascot is the zebra.
Each May, I try to take part in the Ehlers-Danlos Society’s “My EDS Challenge” as part of EDS Awareness month. I’ve been posting on Facebook, Threads, and Instagram and I’m collecting the posts here on my blog. Today marks the first week completed!
Day 1: Share your type of EDS or HSD (if comfortable), introduce yourself, and tell us where you’re from – I was born in Massachusetts with type 3: hypermobility, but not diagnosed until 2015. It is a degenerative, incurable condition that affects the entire body’s connective tissue/joints. For more information, visit the Ehlers-Danlos Society.
Day 2: Then & Now – A photo from earlier in my journey and a recent one.
Day 3: One Thing That Might Surprise You About Ehlers-Danlos Syndrome – EDS causes connective tissue defects that can trigger nerve and muscle dysfunction in the gut. The digestive system becomes paralyzed. This is called gastroparesis, which includes severe vomiting, constant nausea, bloating, and premature fullness, often leading to malnutrition. I’m on a low residue/low fiber diet because my body cannot digest complex foods. I’m a vegetarian who can’t eat salads!
Day 4: You can help raise awareness and change lives through the “My EDS Challenge” by adding a frame to your profile picture here.
Day 5: What Helps Me Most. One management tool, routine, support strategy, or habit that supports my daily life. – My morning routine grounds me. I wake up early with my younger cat, Ada. I take my morning meds and eat breakfast. She sits on my lap and we listen to music. I post my “Ten Random Listens” on Threads.
Day 6: Walk and Roll Wednesday. What movement looks like for me – I use a cane, rollator, and wheelchair to get around as I’m dynamically disabled.
Day 7: A Good Day Looks Like … minimal pain, no vomiting, no migraine, little to no subluxations, no fainting, a stroll (using my rollator) with my husband in nice weather, a cat on my lap while I write a blog post and listen to music.
This Charming Amy 
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