Living with Ehlers-Danlos Syndrome, Type III – Hypermobile

About Me

Lilah LeBouef at Age 49
Lilah LeBouef at Age 49 with Velvety Skin — One of the Few Benefits of EDS3

You will, no doubt, get sick of reading about me as you spend time on this website. However, I have the worst case of Ehlers-Danlos Syndrome, Type III – Hypermobile (EDS3) of anyone I have ever met in person. So, my case serves as the basis for discussion here as others, including you, will hopefully add their, and your, experiences, as well.

For as long as I can remember, I always knew there was something wrong with me and that I was not like other people. I was terrible at most athletic activity. My closest sister, a year younger than I, was a better climber, a faster runner, and a more coordinated mover in general. Now, with me at 50 and her at 49, we are just starting to recognize signs of EDS3 in her medical issues.

Adult Family Culture

My younger sister and I are not alone in our collective gene pool. Along with my siblings, we actually are a family of seven girls and three boys from an area near New Orleans, Louisiana. We are a creative bunch of singers, songwriters, musicians, storytellers, playwrights, poets, painters, sculptors, metal crafters, visual artists of all kinds, seamstresses, and, of course, great cooks. All of us love life and beauty in its many forms, although most of us have faced serious health problems, from heart attacks to cancer. Despite the plethora of health issues our aging family has accumulated, my younger sister and I seem to be the only ones with EDS3.

EDS Type III – Hypermobile

My older sisters played “school” with me and my younger sister and taught me how to read when I was three years old. That sparked a love affair that still burns brightly, thankfully so, because my waking hours have become at least 90% sedentary since the degeneration of my EDS3 has reached its current state. Nevertheless, for most of my life, I have been a professional writer and editor. I am a passionate spectator (via television) of gymnastics, dance, figure skating, football, equestrian events, and pretty much most things I can no longer participate in because of my near certainty of injury. In addition, I was married for 30 years, and I have one adult son. Not one aspect of my life, though, has escaped the ravages of EDS3. It started early and took over major chunks of time as soon as I reached adulthood. Now it dominates my existence.

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