I read an interesting article posted on Living the Diagnosis by Vicky Warren. I’ve got to applaud her for sheading more light on Ehlers-Danlos syndrome (EDS), a genetic rare disease/syndrome.
People with EDS have defects in their connective tissues, blood vessels, and membranes. It affects about 1.5 million people worldwide.
Ms. Warren gives a 12-step “here’s the disease” basics which is so helpful. But it’s because she lives with the disease that makes it such a powerful article. She describes some of the challenges and pitfalls of this serious condition. I really admire her.
As I begin my own quest to learn more about EDS, I’m becoming more aware how difficult it is for some people to get a proper diagnosis.
I guess part of the reason is because the syndrome affects people differently although there are six basic forms of the syndrome. Some of these forms can be very dangerous.
It also seems like EDS is difficult to diagnose because other diseases have to be ruled out first. That will typically involve consulting with a geneticist.
Many people are diagnosed in childhood but some adults don’t receive a proper diagnosis until early adulthood. It appears that the disease may lay dormant for several years. Then, suddenly, it attacks the body during an acute flair.
Ms. Warren states that she’d been getting progressively weak over the course of many years. Then suddenly she needed a wheelchair during an acute flare. EDS can progress and then retreat, so living with the unpredictability of it must be tough.
I can only imagine the worry and fear she experienced. It must be unspeakably difficult at times. I really commend her for having the courage and strength to disclose and so openly share her journey. I’d like to know more, actually.
