Published: 07/03/2023 Tags: Stories

I have not been diagnosed long and I am trying to accept everything

Hi, my name is Courtney, and last year I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS, formally EDS Type 3). I am also having genetic testing done to see if I have any genetically-defined EDS types.

Unfortunately, it all started when I was 17 years old, and I was constantly sick and in terrible pain and back and forth from the emergency department. No one seemed to know what was going on.

Eventually, I met a doctor who said I had severe acid reflux and a hiatus hernia. He was very shocked because I was very young and very skinny and had no idea what caused them. I went on to have emergency surgery and thought everything would be fine after that, but I was wrong. I ended up having the surgery done three times which means half my stomach is now wrapped around my esophagus.

After that my bowels started not working very well. I got told multiple different diagnoses they thought could be. After eight years of emergency room visits, five surgeries, and a crazy number of tests and procedures they finally figured it out. I had EDS which is what caused my acid reflux and everything else.

I have not been diagnosed long and I am trying to accept everything. I also am getting tested for POTS as my heart rate is very fast, and I also recently got told I have a weak aorta.

I am a Zebra.

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