Unbreakable - a Column by 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…

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,…

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…