ID: The words New Blog Post in the upper right hand corner. A picture of a long white hallway with two forearm crutches leaning to one side and the words Journey to Diagnosis above it.
The Ehlers Danlos Society lists an average of 10-12 years to be diagnosed. My journey was a little different. My maternal grandfather, uncle, and aunt were all diagnosed with an Ehlers Danlos Syndrome long before I was born. So when I was toddling around, my grandmother pointed out that my gait was off and asked my mom to have me tested. This was the early nineties, so “testing” looked a lot different.
One of my earliest memories is being asked to walk down a long, white, fluorescently lit hallway while everyone watched carefully. I don’t remember the rest of the testing or appointment. The story goes that the doctor acknowledged my hypermobility and family history by warning my parent’s that I should avoid “party tricks.”
At the time, between a lack of research and awareness many doctor’s understanding of Ehlers Danlos Syndromes were much poorer than they are today. The doctor didn’t have a lot of information or recommendations to give to my parents. And in turn my parents didn’t have a lot of places to look to get that information. I used to feel that my early detection didn’t really afford me anything. There were no tangible guidelines recommended to me. But when my symptoms worsened in college I was able to mention this almost forgotten diagnosis. I was able to gain access to the information I needed to start supporting myself.
One of the best parts of my journey with an Ehlers Danlos Syndrome has been to see the amount of and access to information get so much better. I can easily find research, recorded lectures, lively social media groups, books and publications, virtual support groups, podcasts, and of course, blogs. As someone who was actively sick before Facebook launched their groups feature, I can declare with certainty that it’s much better to have too much information than not enough. I believe that more information is empowering. It’s often a first step on many people’s journey to diagnosis.
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