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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.