"In just the last week, we've lost five of our zebras from our support groups here on Facebook. They have died from EDS or EDS related comorbidities. There is a common misconception that you have to have the vascular type to die from EDS and that's simply not true. Anyone who tells you EDS can't kill you is either misinformed or is afraid of their own mortality. That doesn't mean it's a death sentence for every person, but we have to be realistic. 80% of our bodies are made up of collagen and zebras have defective collagen. That means 80% of our body parts have the potential to fail on us in some way, which could potentially lead to our death if it goes undetected or untreated. And many of our comorbidities cause other systems to fail in this sort of cascading effect that doctors find hard to diagnose and deal with. In other words, one thing goes wrong, and then it's like dominoes. That can result in disability or death fairly quickly, which is what happened in Barbie's case this week.
So the short answer is, "terminal" is probably the wrong word to use. "Fatal" or "morbid" might have been better, I don't know. I'm not up on the proper terminology. The point they were trying to get across is the seriousness of the disease and I'm very, very glad they did because the seriousness is what's going to bring more awareness for us, which is desperately lacking. Five zebras died suddenly this week. Those are just the ones we know of. They were young and vibrant and better treatment might have saved them."
~By Lael Youngblood Tallini
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