Hypermobility & Family History

Looking for patterns keeps me safe—or so I’ve told myself over the years. A few months ago, I started researching hypermobility and autism. Something tickled the back of my brain, and after running my first 5K and being in so much pain, I knew I had to invest time and resources in physical therapy. Now, with a diagnosis of hEDS in hand, I’m off to see more doctors than I’ve seen in a long time.

What I couldn’t shake was the realization that this is a genetic condition. I wanted to figure out which side of the family tree I had to thank for my lack of collagen formation. I knew it wouldn’t change the physicians I had to see or the exercises I needed to do, but investigating a mystery would be a good distraction. Then I remembered: my paternal grandfather needed both his hips replaced at the age of sixty. I quickly became frustrated when I realized a definitive diagnosis for him would be out of reach—he’s been gone for over twenty-five years. That didn’t stop me from researching every other possible reason he might have needed his hips replaced, but none seemed likely.

There’s no genetic or blood test for my type of EDS, so there’s no way to know for certain if it came from my paternal lineage, but I have my suspicions. Since I can’t go back through his medical history or have him examined today, I can only revisit the stories I’ve been told: how he found farm work grueling and escaped to a career in city planning, how his pastimes were reading classic literature, and how he’d been described as a bit clumsy—a hallmark of hEDS.

I have so many questions I wish I could ask him. What was it like to work on a farm in the heat that can make me feel so nauseous and faint, but that he had to endure for years? Could he tell if something was different about his body starting in childhood? Did he have any pain, and if so, how did he deal with it? Now that I have this diagnosis, one of the first things I did was share it with my family members. I also bit the proverbial bullet about my dislike of doctors and doctors’ offices and started making appointments with various specialists. Because hEDS is a connective tissue disorder, it can affect so many different parts of the body. I’ve made appointments with various doctors based on my symptoms and what I think will improve my quality of life the most. I’m generally skeptical when I see specialists, especially those who are also surgeons. I don’t think that will ever go away. Still, I hope to get some answers and treatments that help me be more active and comfortable. I’m grateful I can seek answers and live in a time with such advanced medical imaging. I’m at the beginning of discovering so much about my new diagnosis.

I’ve also started adding vitamins to my daily routine, and so far, vitamin C has made a noticeable difference. It feels encouraging to find something simple that offers tangible improvement, and I’m curious to see what other small changes might help along the way.