Recently, someone mentioned that I seem to have heightened body awareness. I’d never really thought about it, but I guess I do pay attention to how my body moves (or doesn’t), my range of motion, and how different activities affect my pain levels and mobility. I don’t think I…
Black and Blue Ribbons - a Column by Karen Del Vecchio
I rarely wear short-sleeve shirts, but it’s not because of the same reason I often wear pants instead of shorts. Rather, it’s because I sunburn easily. I practically live in sun shirts while working outdoors on the farm. I don’t know how I made it through summer before these…
Some people like summer. Love it even. I’m not one of them. In fact, if I listed the four seasons for their weather attributes, summer would come in a very distant last. I live in the South, where it gets hot, humid, and sticky most of the time from June…
One of the great things about horseback riding is that when done correctly, it requires an enormous amount of body awareness. While many people see a person riding and think the horse is doing all the work while the rider just sits there, it actually couldn’t be further from the…
I realized earlier that I don’t often think of myself as having EDS. It’s not that I don’t recognize or accept that I have it, but that I rarely ever use it to frame how I’m feeling. For example, I experience a lot of EDS symptoms in my…
Are Blisters Part of My EDS?
Wow, did summer sure decide to turn on its furnace overnight here in Virginia. A day ago, it was in the mid-70s and perfect, and today it was 92 F and humid. Let me tell you, I am not a heat or summer person despite having lived most of my…
Last week, I was able to see my massage therapist for the first time in over three months due to the pandemic. About 10 years ago, I learned that massage is an integral part of my pain management. I don’t think I’d gone more than three weeks or a…
One thing that’s both particularly difficult as well as sometimes wonderful about Ehlers-Danlos syndrome (EDS) is that, for the most part, it’s invisible. Except for my bruising, if you look at me, there’s nothing that would stand out and make someone realize that I have a rare genetic disorder.
Last week, I got some disappointing news. My horse Cherry somehow managed to fracture a bone in her foot. She was fine one day, and then the next she came in very lame after being in her field all night. Usually, the most common cause of such a sudden…
Ehlers-Danlos syndrome (EDS) is strange. Like many rare diseases, it’s unique to each person. For example, different types of injuries present variables in how a disease manifests. Since many of my long-term issues relate to specific injuries, I’ve learned to adapt to my body’s version of normal through various compensations.
Recent Posts
- Attention, cognitive issues tied to pain, body regulation problems in hEDS April 16, 2026
- Why I am no longer thinking of myself as ‘a mess’ due to EDS April 14, 2026
- New study suggests hypermobile EDS and HSD may share a disease spectrum April 9, 2026
- Overcoming my fear of pain to get back on the horse — literally April 7, 2026
- Taking proactive measures helped me better manage my EDS pain March 31, 2026
- New collaboration launched to improve diagnosis and care for EDS, HSD March 26, 2026
- I’m seeing good results from fascial counterstrain therapy March 24, 2026
- Heavy menstrual bleeding affects 9 in 10 women with EDS: Study March 19, 2026
- Forward progress with physical therapy and Pilates boosts my confidence March 17, 2026
- New study finds autism tied to worse health outcomes in hEDS, HSD March 12, 2026