Usually when I tell people that I have Ehlers Danlos Syndrome I get a lot of very confused faces. My typical response is "it's a genetic connective tissue disorder due to lack of collagen that affects my joints." Which I realize is still probably extremely confusing. The best way to explain EDS is that it's a moving target, you can never really pinpoint exactly what it is, as it is very different for every person who has it. EDS is caused by a genetic defect in connective tissue. It is characterized by a lack of collagen, or the tissue that holds bones together at the joints. The amount of people who suffer from EDS ranges from every 1 in 2,500-5,000 people. I've been told in the past that if you have Ehlers Danlos Syndrome, you probably do not personally know someone else who has it as well. There are six major types of EDS: hypermobility, classical, vascular, kyphoscoliosis, arthrochalasia, and dermatosparaxis. All of these types share the trait of soft skin and other skin problems, joint laxity, and easy bruising. Each type has a unique connective tissue defect that causes and array of other systems. The most common types of EDS are hypermobility and classical, both of which I have been diagnosed with. While EDS directly affects the joints, it can affect the rest of the body as well. The typical symptoms of EDS include chronic joint pain, joint dislocations, and over flexible joints. In my personal battle with EDS I have dealt with all of these common symptoms on top of some more miscellaneous ones as well. I like to describe my case of EDS as causing everything in my body to move extremely slow and for some parts of my body as not functioning as they should. The first symptom I noticed, which led me to get diagnosed, was my body being abnormally prone to injury and extreme joint pain. One of the other most consistent problems I have experienced with EDS is a syndrome called Postural orthostatic tachycardia syndrome (POTS), which is characterized by a large increase in heart rate when changing from an upright position and a decrease in cerebral blood flow. Basically, blood has a hard time pumping to my head when I stand up, as my vessels move a lot slower, causing me to feel extremely dizzy and faint. Some people who suffer from POTS experience chronic fainting, which thankfully I have only experienced once or twice. I have also been told by several doctors that POTS can cause chronic migraines, something I have encountered quite frequently within the past few years. On top of POTS and my joint problems, I have also experienced a lot of stomach problems too. My body has a hard time digesting food, and I have been diagnosed with many stomach issues, the most prevalent recently being acid reflux. Alongside of that, a few doctors have told me I probably also suffer from fibromyalgia, a syndrome characterized by overactive nerves which cause pain throughout the body. EDS can also be very tough on girls, as typically girls do not obtain the muscle that a guy might to keep the joints a little more stable. It is also thought to be linked to hormones, and can sometimes affect girls in a different way than it can boys. Although all of these symptoms are hard, I think my biggest struggles have been lack of sleep and the anxiety that comes with EDS. Most people expect that I sleep a lot as someone with a chronic illness, but that is is completely false. Once I lay my head on that pillow, I find my body to be restless after it has worked extremely hard to get me through the day. It typically takes me a while to fall asleep, usually because I am in pain or restless, and once I get to sleep I experience long nights of waking up a lot due to pains or various other problems. I have tried many medicines to help me sleep, but so far I have not found one that seems to do the trick for me. And even when I do sleep, I find myself still dealing with chronic fatigue throughout the day. Anxiety wise, I can be extremely stressed when I experience a flare-up in my symptoms. It can be hard to try to lead an average life when dealing with chronic pain and exhaustion, and personally when I don't feel good, anxiety about what may happen sets it. Referring back to calling EDS "the moving target," it is hard to ever know what will happen and when. Sometimes I deal with a flare-up of symptoms for days at a time, sometimes weeks, and sometimes months. I have dealt with problems with discs in my back, issues with my central nervous system, and even little issues like dental problems. EDS can be crazy sometimes, and you never really know what direction it will take you in. Each case of Ehlers Danlos is unique, and while someone who has it may experience certain health problems, someone else who has it may not. The hard part about Ehlers Danlos Syndrome, like many other health problems, is that it can be extremely contradicting!! Sometimes a medicine may help me sleep, but then it makes my migraines worse. Other times I may sleep in a position to make my stomach feel better, and I wind up hurting my back. So while some of these problems may seem like a simple fix with medicine or a certain therapy or remedy, that is not usually the case. In no way do I list these symptoms because I feel sorry for myself, but I list them to help people better understand what someone who has EDS goes through on a daily basis. The sad part is, so many people who have Ehlers Danlos Syndrome go undiagnosed! To have this multitude of health problems and not understand why or where they came from can be confusing, frustrating, and exhausting. As someone who was blessed enough to get diagnosed early on, I can only pray that other people dealing with these symptoms can get diagnosed and get the help they need. I hope for those of you reading this I gave you a little better of a view on what exactly this syndrome can mean. Now you probably see why when people ask "what is EDS?" I go with the shorter version :)
If you would like to learn more about Ehlers Danlos Syndrome or if you would like to donate to help fund EDS research, please visit http://www.ednf.org.
If you would like to learn more about Ehlers Danlos Syndrome or if you would like to donate to help fund EDS research, please visit http://www.ednf.org.