It Took Me 13 Years to Earn My Zebra Stripes

May is Ehlers Danlos Syndrome Awareness Month. For those with Ehlers-Danlos syndrome (EDS), it is a time where we get to shout awareness about anything and everything regarding EDS 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 13 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 the exact words and phrases medical professionals said to me, but I remember how I felt. I felt hopeless, alone, confused, disconnected — like I was losing my mind. There were many times I wanted to just give up. I would wake up each morning and be disappointed I woke up. To some people, that may sound extreme but if you live with EDS, you know after five, eight, or 10 years of trying to get answers, you get so tired. Just so darn tired.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

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 sixth grade when we had an early dismissal and all the kids were scampering towards the stairwell. I made it down the first flight, but as I 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 nurse’s 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 malformation. The pediatrician started to say the words “growing pains” and I stopped him to explain 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.

I was in a bad car accident when I was 22. I hit the Jersey wall on the interstate going 60 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 20-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 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 (RA). 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 when 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 light bulb 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 very knowledgeable about EDS. We started setting up appointments with specialists. Not long after, I was diagnosed with Chiari malformation type 1 and hypermobile EDS. Then came dysautonomia, which we are still in diagnostic phase of finding out which one. Then mast cell activation disorder. I also developed borderline gastroparesis, which I would call very slow motility. Then we discovered some medications were 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 occulta. I am waiting on a cervical fusion to correct instability in my neck and to help with my cervical stenosis.

From my experience, I’d say the first few years after diagnosis are the hardest. 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, physical therapy, surgeries and medications are building up a quality of life that is going to be better than what 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 13 long years for me to find answers and earn my zebra stripes, which is why I share my story to raise awareness for EDS. If it saves a patient one day from struggling 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 five, 10, 13, or 20 years for a diagnosis. We are zebras, and there are more of us than you think.

As Professor Rodney Gaharme has said, “No other disease in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos syndrome.”