Have you ever heard of Ehlers Danlos Syndrome? Most have not. Ehlers Danlos Syndrome, or EDS as it is known in the healthcare community, is a connective tissue disease that causes multiple problems for the body. What most do not understand is that connective tissue, called collagen, is found throughout the body.  It is in bones, joints, tissues, skin, organs, valves, arteries, and veins.

There are six types of EDS. The most common is ‘hypermobility’, which causes the joints in the body to sublux, or dislocate. Another type is called ‘classic’, which has the hypermobility, as well as other conditions, such as a heart defect called mitral valve prolapse. With this defect, the valve separates the upper and lower chambers of the left side of the heart which does not close properly and can also cause a heart murmur.

Because of EDS, there are also other underlying symptoms that occur, such as osteoporosis, degenerative disc disease, kyphosis, arthritis, migraines, and digestive problems. It also causes migraines, muscle weakness, syncope, tachycardia, and other problems.

There is no cure for EDS, and because there are so few diagnosed with this disease, funding for research is limited. I was diagnosed at age 25 with classic EDS, which affects the joints and the heart. I have had 39 surgeries and have 12 more pending. I am in pain every second of the day. This disease is invisible. Therefore, I look normal to people, and they cannot see my struggle.

It is a constant hardship to get up in the morning, and do the normal things people take for granted, such as walking my dogs. I have to wait 30 minutes or longer to relocate my hip, or my knee, if it was dislocated the previous night, then I can walk my dogs while I am in pain.

During the day, I lay on the couch and watch TV, write, and read. That is my typical day. Most people go to work and are social; I am alone 99 percent of the time. I have great friends who help me, and I would be lost without them, but even they do not understand, nor do I expect them to.

Awareness of this disease is important. EDS gets little to no exposure, and that needs to stop! The world needs to know about EDS, and the people who suffer from the disease. They struggle each day just to do normal things people take for granted. As I am writing this, I have a wrist brace on both wrists and ring splints because if I did not, my fingers and scaphoid bone would dislocate while I type.

EDS is not a deadly disease for some, but for the classic type and the vascular type, it can be a terminal disease. Because of the heart defect, it is possible for an artery to burst or for an aneurysm to occur, with little to no warning. This disease is very painful, and there is not one second of the day where I get to enjoy a pain-free moment.

The next time you see a young and normal-looking person who is parked in a handicap spot, do not automatically assume that they are using their grandma’s handicap sticker, or someone else’s, or even ask them why they are parking there. Just because they appear normal does not mean they are.

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About the author

Christina Goldstein
Christina is a writer from Columbus, Ohio. She is currently writing for a few web sites and has just finished her first novel.

3 Comments for The Invisible Disease: Ehlers Danlos Syndrome

Lorrie Lencina

I really appreciate this article, which is well-written and an excellent yet succinct overview of what Ehlers Danlos syndrome is. I also like the way the author has managed to describe what her life with EDS is like, and also mentions the problem of the “invisible disease” of which Ehlers danlos is one. I am 62 years old and have Classical eds which has resulted in my having a very long list of varied disorders related to this connective tissue disorder. I became completely disabled and unable to work by age 54, and continue to develop new problems as the years go by. It has turned out that some of my worst problems aren’t even related to hypermobility/joint laxity. I have problems such as dysautonomia causing weakness and a narcolepsy like syndrome, i developed fecal incontinence and a rectal prolapse and wound up with a colostomy. My back and neck continue to deteriorate and I have developed spinal arachnoiditis which causes severe and intractable pain. Yet I am told I look “fine” and people tell me they would never know I have all these medical problems.

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Stephanie S.

I am a 24 year old with an unspecified type of EDS. I am totally disabled by it as well. I have had arthritis since I was nine, problems with allergies and nervous system function, Chiari and other neck/brain issues and a tethered spinal cord causing me symptoms similar to a spinal cord injury. My EDS also severely affects my eyes and I am legally blind. I was only diagnosed because I learned about EDS on the Internet…and after I was diagnosed, my mom and sister were diagnosed as well. I still fight with people and doctors regarding my condition and my EDS IS VERY VISIBLE. I can walk a bit but it’s unsteady and I wear braces on my ankles, knees, wrists, fingers and neck. When I am not in my wheelchair I must walk with crutches or a walker because of the spinal cord problems and lower body dislocations. I had to move into a community for physically disabled people and I am on Social Security while my friends start families and go to graduate school. Worst part is, my best friend died from some of the same EDS complications I have and she was only 22. I wish I could have her back but the best I can do is keep fighting for myself and for others. Don’t lose hope. ♥

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Alisa H

Great article! I am a 27 yr old (also in Cbus!) with EDS III, Atleast one of my daughters is also a confirmed zebra. I have had an insane amount of problems my whole life. written off as faking or crazy ect…its good to finally know (DX beginning of this year) whats causing it all. Sucks theres nothing to do about it and my kids and future generations will go through the same. I get so sick of “your not old enough to have that problem.” “wait til your older” “you dont know what tired is” “you look fine to me” “whats the problem now?!” Even people close to me “oh MS is such a horrible disease “…and then treat my EDS like its nothing…. >_>
people need to know what EDS is…so there can be compassion and understanding for people like us. and research/funding will start going towards helping us!

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