The History of Ehlers-Danlos Syndrome Research Is Fascinating

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Pretty much anyone who’s read my column knows I work as a college counselor, live on a farm, and have horses. Another thing about me that most might not know, however, is that I love history. I love to read, especially historical fiction, and I was one of those kids who finds field trips to historical sites fascinating rather than dreadful. 

When I stumbled upon an article by the BBC the other day about Ehlers-Danlos syndrome, I realized I actually knew very little about the syndrome’s history, such as who first recognized it and when. Given its name, it’s logical I assumed the condition was discovered by Dr. Ehlers and Dr. Danlos, but that was about as much as I had speculated.

If anyone else is historically curious like me, following is a crash course on the disorder’s history. 

A condition sounding a lot like Ehlers-Danlos syndrome was described by Hippocrates in 400 B.C. I find that incredible! So, although the first instance of it being discussed medically didn’t happen until the late 1600s (by a man named van Meek’ren), its symptoms have been noted for almost 2,500 years. 

A Russian dermatologist surnamed Tschernogubow was the first to publish a paper in 1892 about the ailment that later would be named Ehlers-Danlos syndrome, but likely because it was published in Russian, its circulation in the rest of the medical world was limited.

Nine years later, in 1901, Dr. Lauritz-Edvard Ehlers of Denmark presented his findings at a conference. The syndrome was again described in 1908, this time by a French doctor named Henri-Alexandre Danlos. The syndrome’s name didn’t surface until years later, in 1936, when an English doctor named Frederick Parkes-Weber suggested it

The basic idea by doctors Ehlers and Danlos remains somewhat intact today: Those affected have trouble with hyperflexibility as well as oddly fragile and stretchy skin. However, research has evolved, and physicians now realize there are numerous types and subtypes of Ehlers-Danlos syndrome.

Additionally, research has shown that other less obvious issues are involved, not only joint hypermobility. These include digestive trouble and chronic pain. As research progresses, the number of types and subtypes of the condition, along with genetic markers that have been found, continue to evolve as research continues to unravel the syndrome’s biological and genetic complexities.

It’s both fascinating and crazy to me that people have noticed the symptoms of Ehlers-Danlos syndrome for thousands of years, yet the understanding of it remains minimal. Don’t get me wrong — as the daughter of a physician, I fully realize that thousands of rare disorders and diseases exist, and it’s impossible for doctors to be intimately familiar with all of them.

Research has led physicians working on Ehlers-Danlos syndrome to conclude that its prevalence may be higher than initially thought. I’m thrilled to see that it’s now being talked about in more mainstream media. Not only does this promote awareness, it also feeds my geeky, history-loving soul. 

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Comments

Julie avatar

Julie

I have this disease
It’s horrible

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Karen Del Vecchio avatar

Karen Del Vecchio

Hi Julie. Yes, I agree, having EDS can definitely suck. While I try my best to stay positive, there are definitely days or moments that are more challenging than others. Please don't hesitate to reach out to a trusted friend or a professional if you need someone to talk to about it!

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Susan avatar

Susan

I found out today I have the disease. I was with my 93 year old mother. The doctor told her she probably has it also. At least I know this is real and I am not crazy. Mom said I first started crying that my ankles hurt when I was 4. I am 66 now.

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Tamara Hull Loucks avatar

Tamara Hull Loucks

I have EDS and interesting enough, I started riding when I was 3 years old and it was the most natural thing for me. I wonder how many of us can naturally ride horses?

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