My Commitment for EDS & HSD Awareness Month
This May, I’ve committing to something deeply personal: walking 26.2 miles over the course of the month to honor EDS & HSD Awareness Month.
That’s right, friends. A marathon. But in the most •Lauren• way possible: slowly, strategically, dramatically hydrated, and with frequent emotional support breaks.
I actually met with my EDS specialist last week before work and she has already written a referral to podiatry, so I’ll be following up with a specialist soon.
I’ve already completed 2 miles, and I’m excited to work on mile 3 tomorrow.
Now, transparency hour.
After the first mile, I had a slight hiccup. My new On Cloud monster 2 tennis shoes and my delicate little connective tissue situation had a disagreement, and I ended up with some sore spots on my feet. Nothing shouts “tissue fragility” like your body fighting back against wearing… shoes…? So dramatic.
In addition to that, the center of my right foot, the inner right ankle, and right calf have been flaring with a bit of pain and tenderness.
And let me be uber duber crystal clear-
Do not walk or exercise on an injury or injured body part. Do as I say, not as I do.
Respect your body. Listen to your body. Modify as needed.
Now, in fairness, this specific right foot/ankle/calf issue has been around since 5th grade when I played on my school basketball team; later when I was in competitive gymnastics; and even further exacerbated in cheer each football season- so this is not exactly a new issue. We’ve already ruled out plantar fasciitis, which means further investigation is needed.
So yes, I’m being mindful. I’m pacing myself. I’m listening to my body. And I’m spreading this marathon across the entire month in a way that honors my body… instead of punishing it.
Because that’s what so many people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) have to learn: movement often requires intention, adaptation, and respect.
My Why
My life changed dramatically following a post-viral illness that triggered severe symptom exacerbation of my connective tissue disorder, Ehlers-Danlos syndrome, & activated a mast cell disease- leading to 125+ newly acquired food allergies.
Navigating these conditions has reshaped every part of my daily life, including how I move, work, & even breathe. Many aspects of everyday life now require intention, planning, pacing, & persistence.
My goal is to raise awareness, share my story, & remind others that life doesn’t end at diagnosis-for so many of us, diagnosis is when and where life BEGINS. “How?” You may ask- because with diagnosis comes diagnosis codes. With diagnosis codes comes access to possible therapies.
While there’s no FDA approved treatments or cure for EDS or HSD, a lot of US-based insurance companies are covering more and more therapies for patients with hEDS and EDS diagnoses.
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The fundraising link below directly supports The Ehlers-Danlos Society. The Ehlers-Danlos Society has committed to working towards reducing delays in diagnosis, breaking down barriers to care, and funding essential education, advocacy, & research for patients like me.
Learn more below ⬇️
This is directly from their website <3
May is EDS and HSD Awareness Month, and every year, the global Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) community joins together to raise awareness and move the progress forward.
We invite you to join us in May to raise awareness and funds for a future in which diagnosis happens sooner, care is coordinated, and everyone is believed.
This May, join The Ehlers-Danlos Society biggest virtual Walk and Roll Challenge yet! Movement creates visibility- every action you take starts conversations, raises awareness, and shows solidarity with those living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Together, we can reduce delays in diagnosis, break down barriers to care, and fund essential education, advocacy, and research. Whether you walk, roll, or move your way, you’re helping shine a light on invisible conditions.
Fundraising Goal
I’m trying to raise $1,500 this month for The Ehlers-Danlos Society’s mission!
And I’m so grateful to share that I’ve already raised $103, thanks to a generous donation from my sweet friend Jennifer from my hometown.
Jennifer, thank you for believing in this mission and in me.
Want to Support?
If you’d like to donate to The Ehlers-Danlos Society and support awareness, advocacy, education, and research, I’ll place my fundraising link below.
26.2 miles. One mile at a time.
One conversation at a time.
For a future with better care. 🦓🧡
Hi friends! My name is Lauren. Thank you for being here and for making it this far. If you like what I’m doing here and want to support me/the blog – feel welcome to follow along on Instagram or TikTok– where we’re now 10k strong and continuing to grow! I’m focused on my Fundraising Goal of raising $1,500.00 USD for The Ehlers-Danlos Society this month. If you’d like to contribute, please click here. I also accept patient stories, if anyone’s interested in sharing their rare disease experience or looking for a place to share their diagnostic odyssey or promote your blog/business- reach out to me, I’d love to elevate other rare voices. I’m so happy you’ve found your way here and happy you chose to be here for another day. <3 XoXo, Lauren
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