The long quest to learn the reasons for my strange symptoms and illnesses

Hello world, I’m Lacy Rosenbaum, your hot-off-the-press Ehlers-Danlos News columnist. I’m lucky enough to call a stunning corner of Montana home. It’s the kind of postcard beauty that makes you want to get out and explore — except there are far too many days when my body says no!

The outdoors have always been my sanctuary. In my early years, I was a total tomboy on my family’s farm, hanging out with our horses, chickens, and just about any other animal I could convince my parents to buy. I felt most at home in the saddle, on my dirt bike, or hiking alongside my dad through some of our country’s most breathtaking backcountry. If it was outdoors and got the adrenaline going, you better bet I was there!

As I grew older, I embraced my femininity more. With big hair, fancy makeup, and long nails, I earned the nickname “Hollywood” — I was even the varsity cheer captain! I loved the contradiction of appearing polished and girly while keeping up with the guys on our outdoor adventures. I enjoy the look of surprise on folks’ faces when they realize I’m much more than meets the eye.

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A search for answers

As active as I was, I knew I was different, like in my bones; the terrible aches and pains that accompanied everyday activities grew worse with each passing year. My immune system was never stellar, and I had my share of very weird ailments, some leading to hospitalizations. I thought my puny immune system was due to my premature arrival into this world. It always took extra effort to participate physically in the things I enjoyed.

At times, I was confused by why life seemed to throw more curveballs at me than my peers. I tried my best to fight through the challenges until, in my late 20s, after my third child, my body suddenly deteriorated and changed the way I lived. Every aspect of my life was affected — my body became a foreign vessel that required major adjustments both physically and mentally.

My world was rocked by the betrayal of the strong, capable body I once knew. My muscles trembled with weakness, foods I’d enjoyed now acted like a poison to my body, and I was no longer physically able to even make it through a trip to the grocery store without being bedridden for the day. It was heartbreaking to watch life continue around me while I was left with a body that had become so weak and unpredictable. I barely recognized myself anymore, and losing that strength and freedom while raising my children was devastating.

I found out in 2023 that I have a rare genetic condition called Ehlers-Danlos syndrome (EDS), specifically hypermobile Ehlers-Danlos syndrome (hEDS), and not only hEDS, but the trifecta: mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). I cannot put into words the anxious relief that came with those diagnoses. I finally learned the reasons for my strange symptoms and chronic illnesses.

The road to those answers was rough — confusing and sometimes maddening. Some days, the frustration weighed more than the pain. Still, I stayed stubbornly determined not to give up. I chased the “why.”

You can read more about the road to my diagnosis in my earlier column, “How I learned I was an EDS zebra, not a unicorn.” What an adventure! I spent years collecting diagnoses, like souvenir pins, from a multitude of specialists. Yet, none truly answered my “why.” I knew I didn’t want a diagnosis or disease to define me, but I had a deep need to understand why my body was so different. It wasn’t until EDS and its pesky trifecta sidekicks that everything finally made sense.

It was no coincidence that I discovered Ehlers-Danlos News shortly after my own diagnoses, and it couldn’t have arrived at a better time. I knew immediately that I wanted to be part of this community. I’ve spent my entire life as a patient and an avid medical learner. I’ve walked a long, challenging road. Now, I want to share what I’ve learned to help others along their journeys.

I’ve collected many “tools” along the way to help me through EDS, POTS, and MCAS flares, and I hope to pass them along to you in the columns ahead. As I navigate different experiences, endure hardships, and encounter plenty of trials and errors, I’ll be sharing what I’ve learned with you.

It’s a blessing to have this column to explore the raw, real, and sometimes invisible side of chronic illness. It’s time to pull back the curtain on the daily struggles and the changes we must make to thrive in our complex bodies — and to celebrate the victories in this busy, beautiful life. I hope you’ll join me here as we step into this new adventure together.

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.