My EDS Story
I cannot remember a time that I didn’t have some sort of problem with my stomach. I had cyclic vomiting syndrome as a baby, and throughout my childhood, I went to my family doctor frequently for stomach pains and bowel problems. Every time I saw my doctor, it seemed to get better afterwards, so we never pushed to see anyone else and assumed it was just a virus. The random spurts of pain and lack of appetite continued throughout high school, and eventually, they were consistent for a few months after I graduated. I lost quite a bit of weight, and I did not have that weight to lose since I am small to begin with.
My father had been diagnosed with Celiac Disease a few years prior, so it was on my radar. I was sent to a gastroenterologist, and I was diagnosed with Celiac Disease as well. I had always had joint pain if I hiked too much or ran, but it didn’t bother me on a daily basis. My doctor explained that once I healed my gut, my joint pain would go away.
I changed my diet, and I gained almost all my weight back. It felt amazing to eat without pain again, but my joint pain kept getting worse. I didn’t think to go back to the doctor until I was in marching band in college. We had band camp all day for a week, and I had to stop every few feet to rub my knees or stretch. I continuously rolled and sprained my ankles, and I couldn’t find a reason why. The pain did not respond to any over the counter pain meds, and I could not find anything that helped except rest.
It caused such issues during band that I was referred to a rheumatologist. The first appointment was overwhelming, and she asked whether I was hypermobile or did party tricks with my joints as a child. I didn’t know what she meant, so I told her no.
She ordered every blood test under the sun, but they all came back normal. On a whim, I decided to look up online what hypermobility was, and not surprisingly, I fit the description perfectly. During my follow up, I mentioned that I thought I might be hypermobile, and she assessed me for Ehler’s Danlos Syndrome, Hypermobility Type. I was diagnosed the same day, and shortly after, I was diagnosed with POTS, slow gastric motility, and many other comorbid conditions. At the time, I had minor symptoms and wasn’t disabled, so she believed that a geneticist appointment was not necessary, especially due to the expense. Now that my symptoms are more severe, I hope to be evaluated by a geneticist when I have the funding available to rule out the other types of EDS.
Through my diagnosis, I was able to receive accommodations at school to make college less stressful, and I have a service dog prospect named Quimby. By learning to modify my diet, I have less nausea and stomach pain, and I am in the process of getting a wheelchair to help with my joint pain and fatigue. I have friends who truly care and support me, and I have met so many amazing people that I wouldn’t have before. I have a completely different outlook on life than I used to, and I have discovered hobbies that I never thought I would enjoy. As much of a
pain in the neck EDS is (literally!), I would not consider changing it even if I could.
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