May is Ehlers-Danlos EDS Awareness Month

Ehlers-Danlos Syndrome (EDS) is a group of conditions that often go unseen, unheard, and misunderstood.

EDS is a group of genetic connective tissue disorders that affect the body’s ability to produce strong collagen. That might not sound all that bad, but when you consider collagen is everywhere in the body (skin, joints, blood vessels, and even organs) it can be hard to pin down causes and also to diagnose.

Those hypermobile joints, frequent dislocations, chronic pain, fragile skin, and even life-threatening complications become a game of whack a mole of diagnoses

Most people who suffer from EDS spend years seeking a diagnosis visiting nearly every medical department you can think of. They’re often misdiagnosed, dismissed, or told “it’s all in your head.”

As a EDS Mom and sufferer myself, I was very happy to say YES, let's spread awareness about Ehlers-Danlos Syndrome here on the blog as well as in the 2026 issue of Wildflowers magazine

I asked the ladies to share about their journeys, here is what they had to say:

If You Can’t Connect the Issues, Think Connective Tissues My Journey with hEDS, POTS, and MCAS

As a child, I never thought twice about how easily I could bend or stretch. I beat everyone in the Sit & Reach test, folded myself into strange shapes for fun, and shrugged off the little “quirks” I carried—like chronic jaw pain, dizzy spells, and a fatigue that ran deeper than sleep could fix. I didn’t question why my body seemed so eager to contort; I just assumed it was normal.

I grew up dismissing signs that, in hindsight, were clues. A speech impediment, a hernia as an infant, “coat hanger” pain in my shoulders—all things I chalked up to bad luck or things I’d eventually outgrow. Surely, they couldn’t all be related… right? I entered college later in life, full of ambition and hope. But while my peers thrived under heavy workloads, I could only manage two classes and part-time work. When I was finally diagnosed with ADHD at 25, I felt a wave of validation—and yet, the fatigue and physical symptoms remained. It took me six determined years to complete my associate’s degree. Not because I lacked drive, but because I had to honor a body and brain that needed to move at its own pace. Motherhood should have been a joyful milestone, but instead, it delivered a harsh wake-up call. A single push during labor caused a ruptured disc and two bulging ones. Months of rehabilitation followed, during which physical therapists often described me as “loosey-goosey.” Eventually, I learned what that really meant: I was hypermobile—and it was part of something bigger. By the time my son turned two, I was balancing motherhood, nursing school, and a difficult custody battle. I assumed my exhaustion was the result of stress. But when the stress faded and the fatigue remained, I knew there had to be more to the story. With my nursing background and growing intuition, I became my own investigator. I tracked every flare-up, dizzy spell, and symptom pattern until the pieces began to form a picture.

The diagnoses came: hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Naming them didn’t solve everything—but it gave me a map. Even now, every “good” day comes with caveats. One careless movement can subluxate or dislocate a joint. On the hardest days, I feel a fatigue so heavy it takes everything just to exist. But I’ve learned to pace, to plan, and most importantly, to extend compassion to myself. These conditions don’t define my worth—they define the margins of a survival story that continues every day. Each step forward is powered by love for my son and a determination to be a voice for others still searching for answers.

May is EDS Awareness Month. For those still lost in the maze of misdiagnoses, we say: If you can’t connect the issues, think connective tissues. By sharing our stories, we create light where once there was darkness. And together, we are stronger.

*Bebe Kay: Finding Strength in the Struggle*

Bebe Kay is a 38-year-old wife, stepmother, business owner, and artist who has spent the past several years navigating life with multiple complex chronic illnesses. Diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Behçet's Disease, Bebe’s medical journey began in earnest following a traumatic car accident five years ago. That accident left her with a traumatic brain injury and severe spinal degeneration. But it also marked the beginning of a long and often frustrating search for answers—one that spanned several states and three years of pushing through a system that often overlooks invisible illnesses.

Today, Bebe lives in partnership with her husband Kevan, and together they are raising three stepchildren and a joyful menagerie of pets. She owns and operates *Bee Enchanted Florist*, a flower shop the couple purchased in 2019, shortly before her life changed. Though chronic illness has made daily life more challenging, Bebe continues to find ways to balance her many roles—with creativity, humor, and a fierce determination to keep moving forward.

Before her diagnosis, Bebe was an avid sculptor and painter. While her conditions now limit her ability to create in the same way, her love for the arts remains strong. She holds a Bachelor of Arts from Salem College and still finds joy in visiting museums and attending plays when her health allows. Her passion for beauty and expression lives on in her floral work and in the way she continues to build community and share her story.

The unpredictable nature of her conditions means she often faces a cascade of symptoms—ranging from joint dislocations and vascular inflammation to debilitating fatigue and gastrointestinal issues. Some days, she requires mobility aids. Other days, she’s able to enjoy outings with loved ones. The contrast is part of what makes invisible illness so misunderstood and isolating. As Bebe explains, “You look young and healthy, so most assume there’s nothing wrong with you.”

Despite the physical and emotional toll, Bebe has found strength in community. Through connecting with other women who share her diagnoses, she has built a network of support, validation, and shared resilience. “They’ve helped me find care, feel less alone, and reminded me that we don’t have to do this by ourselves.” Being featured in this publication is more than a personal milestone—it’s a chance to raise awareness and bring visibility to the realities of living with chronic, invisible illness. “I hope my story inspires someone else who’s struggling to reach out and find connection,” she says. “Together, we can overcome anything.” Bebe encourages readers to practice patience and compassion. “Please take a moment before passing judgment,” she adds. “So many people are carrying invisible burdens. If you're able, consider supporting organizations like the Ehlers-Danlos Society. Visibility and understanding can change lives.”

Melissa the photographer again here- popping in to encourage you to support BeBE if you are in the Green Bay Wi Area or want to send someone in the area flowers! Her website is Bee Enchanted Florist

At the ripe age of 22 you always hear "let's go out". As easy as that is for them, it's not for me. Chronic illness is hard to handle but embrace your strengths.

I want to share my experience with Ehlers-Danlos Syndrome (EDS) because it shapes so much of my life. Living with EDS truly feels like being on a rollercoaster, and I know I'm not alone in this journey. The constant pain and stress can feel overwhelming at times, always lurking in the background and making each day a bit more challenging.

My joints have a mind of their own, dislocating when I least expect it, which often leaves me feeling unsteady and vulnerable. On top of that, there are moments when my mind feels foggy, turning even the simplest tasks into daunting challenges. Just taking a step can be incredibly tough. What keeps me going, though, is the incredible support of my family. Their unwavering encouragement is like a beacon of hope in the darker moments, reminding me that I don’t have to face this struggle alone.

Seeing my mom, grandma, and siblings confront their own challenges with this complex syndrome fills me with admiration and drives me to push forward. Despite the ups and downs that come with EDS, I've discovered a sanctuary in the water. Swimming is my escape, a brief respite from pain and the limitations I face on land. I recognize that this relief is temporary and that discomfort will come knocking again, but I am committed to not letting EDS define my identity. I endeavor to confront my challenges and provide light and hope for others who might be navigating a similar path.

Coming soon more stories from these amazing women:

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May is Ehlers-Danlos EDS Awareness Month

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