It took many years to piece together the puzzle of my bodily weirdnesses. I spent the last couple of years before my diagnosis of Ehlers-Danlos syndrome investigating several possible connective tissue disorders while treating my symptoms as they arose. As my skills to manage physiological symptoms improved,…
Unbreakable — Kimberly Zapert

One frustrating aspect of Ehlers-Danlos syndrome (EDS) is the number of systems it can affect and the multiple disorders it can mimic. I say “can” because everyone experiences EDS differently due to genetic penetrance and expressivity. Reduced penetrance (not developing features of the disorder) and variable expressivity (the different signs…

Before I was diagnosed with postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome (EDS), I underwent an ultrasound of my carotid arteries to rule out blockage as the cause of my pre-syncope. My arteries were clear, but an incidental finding of a suspicious thyroid nodule…
Living independently with Ehlers-Danlos syndrome is possible. So is living with a partner. Both require some thought and adaptation. Developing and maintaining healthy relationships requires a great deal of work, regardless of physical health. Using a little common sense and vetting your prospects before committing can help you…
The initial pandemic shutdowns last spring brought my family’s very busy schedule to a grinding halt. We decided to use the time to improve our emotional and physical well-being. We worked on our relationships with one another and inducted a new member into our family. During the spring and summer…
After recently honoring Rare Disease Day on Feb. 28, I’m contemplating the obvious: A person is not defined by a diagnosis. This usually means they don’t allow a condition to limit their enjoyment of life or their accomplishments. But that’s not what I’m talking about — not directly, anyway. I’m…
Too often while pursuing answers to health questions, people with an Ehlers-Danlos syndrome are told that their physical symptoms must be caused by stress, or perhaps they’re psychosomatic, because no obvious explanations are available. I related my own frustration about this to my physical therapist several years ago while he…
When I was new to the idea that I may have an Ehlers-Danlos syndrome, I was convinced that I needed a firm diagnosis before I could receive treatment and finally find some relief from problems that had plagued me for years. I believed I had to “name it before I…
Change happens. I have had many roles in my life, including being a daughter, wife, and mother. I’ve also been a student, artisan, neighbor, patient, and advocate. You probably have had similar experiences. Roles have come, and roles have gone. It’s part of the natural waxing and waning of life.
Usually, negative feelings are rooted in unmet expectations. Examining those expectations and deciding if they are reasonable can be particularly helpful when life changes. I recently adjusted my expectations for the holiday season, and now that we have made it through and are settling into the new year, I can…
Acting Up, Ehlers-Danlos Style
A few months ago, our community’s theater company held auditions for two productions. At the suggestion of someone whose opinions I trust, I contacted the theater company and arranged to audition for one. The river that flows from Egypt straight to my house In my excitement to try something new…
In the not-too-distant past, I hated shopping. Walking across parking lots and winding my way through store aisles was incredibly tiring, thanks to my Ehlers-Danlos syndrome (EDS) and comorbid conditions. Prolonged standing and walking led to severe abdominal pains and vertigo. Sometimes I would have to squat in…
Recent Posts
- I’m thankful for the lessons learned and progress made in 2025 December 23, 2025
- Walking saps more energy from hypermobile EDS, HSD patients: Study December 18, 2025
- My first physical therapy session went better than I’d hoped December 16, 2025
- People with EDS who have severe pain more likely to use cannabis, cigarettes December 11, 2025
- Trying to understand and manage changing trends in my health December 9, 2025
- Connective tissue damage is severe when EDS meets joint disease December 4, 2025
- My healing journey continues after a physical therapy evaluation December 4, 2025
- Treatments fail to ease muscle, joint pain for most with hEDS, HSD November 20, 2025
- Acknowledging the setbacks in my EDS healing journey is hard work November 18, 2025
- An old EDS injury leads to a miracle pop and free shoulder movement November 11, 2025