Ehlers-Danlos Syndrome, Suddenly so Much Makes Sense

To understand the latest diagnosis, I need to go back a few years. This is an excerpt from December 12, 2015

It's been several years since Jayde was forced to give up taking dance classes. It was a difficult decision, but in the long run, the three of us knew it was for the best. As much as she enjoyed dancing and golfing, it was apparent her body was not a fan. So when she came to me and said she was trying out for the cheerleading squad, I was leery, but I certainly wasn't going to discourage her. The week before the tryouts, she began preparing herself by stretching, exercising, and keeping herself hydrated. The first night, she came home so excited. That spark in her eye and fire in her belly was reminiscent of her dancing days. I loved it. Day two was similar, she went on for almost thirty minutes about the session, but the embers were steadily fading, and she started a steady dose of Advil and Tylenol, and requested an Epsom salt bath. On day three, she had a considerable amount of trouble moving, but she was determined to see this through until the end.
Meanwhile, I was silently worried about what would happen if she made the squad. Even though I knew she was struggling, I was unprepared for day four. Chris went to pick up Jayde, but when they returned home the look he gave me spoke volumes as he carried her into the house because she was in too much pain to walk. She spent the next few days in bed. Needing a lot of help. She didn't make the team, but I think she was actually relieved.

Thanksgiving, she sat with the family for a little while before returning to her room. Black Friday, otherwise known in our home as Christmas Tree Day, was rough. She briefly walked and smiled for photos, but I could tell she struggled. I eventually told her to sit in the tree wagon, and Chris pulled her through the fields. Saturday, Chris's dad, moments from being released from the hospital, suddenly coded and died. Our world was turned upside down. He had survived cancer, but the treatments had taken a toll on his body. None of us had the chance to say goodbye. In addition to emotionally struggling, Jayde was still physically having a difficult time. Dad was buried on December 8. I didn't send Jayde back to school until December 14, partially because she needed time to grieve and partially from the overwhelming pain she was still experiencing. Who knew trying out for the cheer squad could have such a negative impact?

When Jayde was diagnosed with POTS in March 2016, pieces of the puzzle began to pull together. Still, it felt like there was so much missing. Forward, three years, to this past week. It was Hopkins day with Dr. Brenner. I stressed how poorly Jayde was doing and discussed her constant joint pains and fatigue. He asked about her activities, and I explained her history with dancing, golf, the cheerleading tryouts and the crazy things she could do because of her flexibility. While we had suspected EDS for over a year, I wanted him to mske his own diagnosis. He began discussing Ehlers-Danlos Syndrome. Telling us, "After about eleven or twelve, you shouldn't be able to do those things." Thinking about the things I was still capable of at almost fifty, I exclaimed, "Really?" He laughed and said, "You can do those things too, can't you?" I followed with an emphatic, "Yes!" He smiled and said, "Now you know where she gets it from. It's a genetic connective tissue disease with a laundry list of symptoms. If your insurance will cover it, she should undergo genetic testing." I explained how, as a child, teenager, and young adult, my pains were dismissed as "growing pains" and several doctors had done the same to Jayde. He was not surprised. Apparently, I am not the first person to tell him this, and from a few days worth of research, I certainly won't be the last.

As I dove deep down the EDS rabbit hole I began to understand EDS is much more than being hypermobile. I understand why our knees and ankles feel like the joints are slipping in and out. I now recognize the atrophic scaring we both experience, the fragile translucent skin, the constant bruising, the neverending pain and GI issues. Suddenly life came into focus. The picture being clear doesn't take away the daily struggles, but it does help life make sense 




 

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