My journey to receiving a diagnosis of Ehlers- Danlos Syndrome started in third grade. Although completely undenounced to us and my doctors at the time, my chronic migraines and joint pain starting at age 9 would be pieces to a very large puzzle.
At 9 I would undergo my first MRI and CT scans, they would find no damage and attribute the joint pain to “growing pains” and the migraines to “unknown causes.”
It wouldn’t be until middle school that the swelling of my joints would push the doctors to believe that my joint pain was not actually growing pains.
My migraines would not find a source of causation until my sophomore year of high school when they would diagnose me with not only a brain malformation (commonly found in patients with EDS) but also with a type of autonomic function (also a common comorbidity of EDS).
When I broke my back in fifth grade they would do scans of my spine and hips. The scans would show joint damage and the beginning of joint deterioration. Middle school and high school I would be treated with strong arthritis medications. By my senior year of high school when bloodwork showed that my arthritis had dissipated but the damage to my joints continued, the search for a new diagnosis heightened. It didn’t help that at the age of 18 I had close to 40 diagnoses, seemingly unrelated.
My beloved geneticist had been on the hunt for answers since I was 13 and it would be my rockstar orthopedic surgeon that would see with his own eyes what he believed to be the damage of a rare, genetic, connective-tissue disease. My team of doctors at Mayo Clinic gave me the name of my puzzle right before I headed to college.
Ehlers-Danlos Syndrome has no cure and does not hit everybody in the same way or to the same extent. There was no way of telling what this disease would do to my body. One of my doctors explained to me that he couldn’t give me a medicine to stop what was happening to my body, all he could offer was his help to clean up the “messes” as they came.
It’s been about 9 years since I first heard the name, Ehlers-Danlos Syndrome, and 4 years since I was officially diagnosed with type 3 of this syndrome. No one could’ve guessed that within 4 years of my diagnosis that I would have 8 surgeries and reach new heights of severity within almost all of my comorbidities.
Ehlers- Danlos Syndrome has impacted my health in every way and changed my life tremendously, but even today no one can tell me what 4 years from now will look like, heck they can’t even tell me what next month will look like for me.
My journey to diagnosis with EDS is not unexpected for this disease. My experience with my diagnosis of EDS is not surprising for this disease. My story with EDS is uniquely mine and is constantly evolving. I do not find hope or trust from this diagnosis, but I find hope and trust in the one who created me.
I am a zebra. The doctors have always heard my hoofprints, but now they know I’m a zebra, not a horse. My scars are my stripes. My stripes are my story and I choose joy amidst the pain. I choose to encourage and inspire. I choose to believe that healing will come.
Leave a comment