Guest Voice: How I learned I was an EDS zebra, not a unicorn

Lacy J. Rosenbaum is a devoted wife and mother of four, living life to the fullest on her family’s small Montana farm. She enjoys spending time outdoors, caring for her animals, and embracing the joys of motherhood. After years of unexplained, sometimes debilitating symptoms, she was finally diagnosed with Ehlers-Danlos syndrome (EDS) at age 35. Her journey has fueled a passion for health, perseverance, and faith. She now shares her story to inspire others facing their own health challenges.

Have you ever had that nagging intuition that something’s different about your body? That something is off, yet doctors can’t seem to figure it out? That’s where my journey began, caught between a body that felt so unique and a medical system that didn’t yet have answers.

Lacy Rosenbaum’s parents, Kaylene and Jeff, take turns holding her in the neonatal intensive care unit in 1988. She needed to gain some weight before going home after her premature birth. (Courtesy of Lacy Rosenbaum)

My grand entry into this world was nothing short of a miracle, as I was born eight weeks premature, weighing just 2 pounds, 7 ounces. My father could cradle my head in his palm.

My first weeks were spent in an incubator in the neonatal intensive care unit. I was so tiny that I was wrapped in clothes for Cabbage Patch dolls. But my fighting spirit was strong, setting the foundation for a life of health challenges, miracles, and a relentless search for answers.

Years of unexplained symptoms

Growing up, I was an adventurous little girl, active on our hobby farm and in hunting, fishing, hiking, dirt biking, and sports. But something always felt off. After every activity, I’d need a nap, as I was exhausted beyond reason. Agonizing leg pain beyond growing pains was a constant. My skin would split under my pinky toes, an oddity my parents attributed to my preemie birth. Not to mention that normal childhood illnesses had landed me in the hospital and hit me harder than my peers.

In my teens, I was an avid hunter, varsity cheerleader, and outdoors girl. Despite pushing myself to be strong, I still caught dozens of viruses, each causing uncommon symptoms. Add in a bad cheerleading fall, a car crash, and dirt bike wrecks that left me with musculoskeletal injuries, requiring yearslong cycles of physical therapy, chiropractic care, and acupuncture. By then, I was fighting scoliosis, undiagnosed postural orthostatic tachycardia syndrome (POTS), chronic fatigue, and relentless body pain.

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I remember feeling far too young to rely on deep tissue massages, but they were the only temporary escape from my pain. Despite it all, I refused to let my immune system attacks, muscle weakness, and chronic pain keep me down for long. I fought through, unaware of what was lurking beneath the surface.

Lacy Rosenbaum enjoys a moment of distraction from a series of unexplained illnesses on Lanikai Beach, Hawaii, in November 2022. (Photo by Lacy Rosenbaum)

Adulthood brought a hard-earned, strong, muscular body — something I didn’t realize I would one day lose. After marriage, my pregnancy and childbirth were definitely far from typical. My first birth was a complicated delivery, but again I blamed my preemie status. My second cesarean section went more smoothly, but each pregnancy was harder than expected.

Then came the birth of my third child, when my health took a drastic turn. Foods I once enjoyed caused unbearable pain, and my gastrointestinal tract, already sluggish, tried to fail completely. I saw specialist after specialist, receiving diagnoses of irritable bowel syndrome with constipation, chronic fatigue syndrome, fibromyalgia, tachycardia, and anxiety. But my strangest symptoms were always brushed off, which left me feeling frustrated and dismissed.

I could no longer play with my children or continue to give them the adventurous upbringing I’d dreamed of. My fierce independence faded as my body became unrecognizable. I tried everything from elimination diets, naturopathy, and several other unconventional health protocols, but nothing worked. After the miraculous birth of our fourth child, my muscles became so weak and spasmed so incessantly that I could barely walk short distances. I was a shell of the woman I once was.

Becoming an EDS zebra

The next few years were a roller coaster, stripping me of the ability to do even the simplest tasks, such as grocery shopping or spending active time with my family. I was heartbroken. Specialists mostly acknowledged my unusual symptoms but offered no answers, calling me a “unicorn,” a medical mystery.

In the spring of 2023, when I was at my lowest, on my knees, and begging God for answers, a divine twist of fate played across my news feed that changed everything. It was a video of a woman describing her rare conditions that mirrored my experiences, and her hypermobility was like that of my daughters. I had to know more.

Prior to her EDS diagnosis, Lacy and her daughters Morgyn and Reinzlee go for a ride with Sally the horse on the family’s northern Idaho ranch in summer 2014. (Courtesy of Lacy Rosenbaum)

After extensive research, I emailed my doctor: Could I possibly have this rare disorder? He had some reservations but agreed to refer me to a specialist he knew. The wait felt like an eternity, but when the appointment finally arrived, I was filled with excitement.

At last, I had answers, an explanation for the bizarre symptoms and illnesses I’d experienced throughout my life. I was diagnosed with EDS (the hypermobile type) along with mast cell activation syndrome, POTS, and dysautonomia. I could’ve cried! Not from sorrow, but from relief. I hadn’t been wrong. I had trusted my intuition and never given up.

I’d like to impart this to you: Have unwavering hope through the storms, choose a positive attitude, and always fight for your health. Someone else can relate, so don’t give up. Now, even on my bad days, I have peace knowing what’s going on in my body. This journey now helps me guide my three children who inherited EDS so they don’t have to endure 35 years of pain without answers. We’re not unicorns, we’re zebras.

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.