May is Ehlers Danlos Syndrome Awareness Month. For those with EDS, it is a time where we get to shout awareness “anything and everything” from the rooftops. (Well, maybe not rooftops, but a safe, cushioned wheelchair?) It is because of someone sharing passionately about EDS that led me to my diagnosis after thirteen long years of waiting, searching, misdiagnosis and pain. I am not only referring to physical pain, but emotional and spiritual pain, as well. When so much time goes by and the doctors cannot agree on what is wrong with you or tell you that nothing is wrong at all, you start to doubt. You begin to question the reality of what is going on inside your body. I do not remember exact words and phrases that the medical professionals spoke to me, but I remember how I
I felt hopeless, alone, confused, disconnected and like I was losing my mind. There were many times were I wanted to just give up. I would wake up each morning and be disappointed that I woke up. To some people, that may sound extreme but if you live with Ehlers Danlos Syndrome, you know after 5, 8 or 10 years of trying to get answers you get so tired. Just so darn tired.
My symptoms started in childhood, with frequent sprains and minor injuries. I had about 15 ankle sprains by the time I was in middle school. I vividly remember one day in 6th grade we had an early dismissal and all the kids were scampering towards the stairwell. I made it down the first flight but asI turned the corner and stepped on the first stair of the second flight, my right ankle just gave out. I tumbled down the stairs and could not get up or put weight on my foot. The other students walked right by me or stepped around me. I was mortified. Eventually a teacher came and carried me to the nurses office. It was lots of injuries like this, all the time. I broke my finger catching a basketball when it hyperextended back. Whenever I complained about leg pain or headaches the doctors told my mother it was growing pains or stress. My children are beginning to show signs of EDS and one has Chiari. The pediatrician started to say the words “growing pains” and I stopped him and explained why I preferred he not use that term when treating my boys. It opened the door for a real conversation about EDS and how often it gets overlooked.
When I was twenty two I was in a bad car accident where I hit the jersey wall on the interstate going sixty miles per hour. I hit it head on, spun around and hit the side of my car, where I then stopped facing oncoming traffic. I had been pushed off the road by another car, in the rain. Nothing was broken. I had no internal bleeding. I had bad whiplash and a concussion but that was the extent of my injuries. I was very sore the next day. My body hurt in places I did not know could hurt. However, I figured it would pass soon and I could get back to my carefree life being twenty-something. That is not how the story went, though. I never recovered. I continued to have widespread pain in my back, sacrum, neck and joints. The joint pain hopped around. Climbing stairs hurt my knees. The doctors were baffled, I was baffled and all they could do was load me up with pain meds and assure me that I would recover eventually.
After about a year, it was apparent that something else was going on and the specialist visits started. The imaging started. The testing started. Most came back normal which was upsetting to me because I knew what my body was telling me, and it was not what the imaging was saying. They considered autoimmune because of the markers in my blood tests and began treating me for Rheumatoid Arthritis. The medications used to treat RA had some very nasty side effects and I gained a bunch of weight. I also started losing my hair and eyesight. It was about this time that my primary care doctor brought up Ehlers-Danlos Syndrome. At the time, I did not agree with him because I did not think I had “stretchy” skin. He also did not explain it very well to me and I was still very young and skeptical of anything doctors told me. I wish I had listened to him. I have since moved away from the area but I hear he is treating many EDS patients in his practice. Kudos to him.
About six more years passed and an old friend of mine started sharing stuff on facebook about EDS and how they finally figured out what was wrong with her. I felt like a big lightbulb went off over my head! She and I had a lot of the same issues and we used to hang out while relating to each others experiences. I began to get curious. I reached out to her and started asking questions and searching for answers. I educated myself on the illness, because I wanted to be ready to educate my doctors. The more I read, the more everything made sense. It was like someone pulled open the shades and I could see so clearly how the puzzle pieces fit together. I went to my new primary care in the area I now live in and it turns out she was super knowledgeable in EDS. We started setting me up appointments with specialists. Not long after that I was diagnosed with Chiari 1 Malformation and Hypermobile Ehlers-Danlos Syndrome. Then came dysautonomia, which we are still in diagnostic phase of finding out which one. Then mast cell activation disorder. Borderline gastroparesis, which I would call very slow motility. Then we found out about the medications not being metabolized correctly. All of my health issues are related to my EDS. Right now, I am being evaluated for tethered cord and a mild spina bifida oculta. I am waiting on a cervical fusion to correct instability in my neck and to help with my cervical stenosis. I would say the first few years after diagnosis is the hardest. That has been my experience. I feel like I am climbing a mountain and at the top I will get to sit down and rest. I will get to feel a little bit better. All the treatments, PT, surgeries and medications is building up a quality of life that is going to be better than I have now. I have seen other EDS patients do it. I know it can be done. That is why I have faith and keep pushing on. It took thirteen long years for me to find answers. This is why I share about EDS awareness, if it saves a patient one day of suffering and waiting then I will share 100,000 times. I also do this for my children, so they never have to be doubted or struggle to find out why their body is turning on them. I will continue to spread awareness about EDS until my time here is over. Nobody should have to wait 5, 10, 13, or 20 years for a diagnosis. We are zebras, and there are more of us than you think. Maybe we are the ones who are actually horses and you are the zebras.
“No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome.” Professor Rodney Grahame.
Check out DSN's EDS info page HERE