My EDS Challenge: Day 2 Diagnosis in Life with Ehlers Danlos

  • May 2, 2021, 4:40 a.m.
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  • Public

I am taking part in #MyEDSChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 2 of the challenge: Share your diagnosis story. The average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-12 years: for some, it can take decades. Early diagnosis is crucial to positive patient health.⁠

Too many in our community report that they are forced to travel far and wide to access a physician who knows how to manage their healthcare, often at great personal expense, and often with incredibly long wait times of over two years. In some countries, there is no recognition of EDS or HSD, or very little knowledge or understanding on how to manage symptoms.⁠

As these conditions are multi-systemic, the problems often go unconnected for many years. Many report being told their symptoms “are all in their head” or that they cannot possibly be experiencing the pain or other symptoms they say they are. Misdiagnosis is common, delaying treatment, or resulting in unnecessary surgeries or unsuitable treatments.⁠

My Story: The way I uncovered the vocabulary to describe the awful things that had been happening to me since childhood, could take an entire podcast as I am sure many people’s could. I was focused on one thing that was most in my face (my neuropathic pain/pudendal neuralgia) and ignoring all the other symptoms that were less serious. In October of 2020, through my PT’s in Illinois, they had connection to a native american man. He saw some stuff from my past that I hadnt told anyone AND he told me “I think you have EDS, you should look into this” and well, I did and made the connection. All the other symptoms fit into place. A few days later I was to be stented for Maythurners syndrome and my vascular doctor agreed that I had many of the characteristics despite my less flexible nature than most and my primary doctor agreed and said ” ohh I should have known this, I had some education on it in school!” I dont blame her because the way I present is a little different than most. I had genetic testing done to rule out the more rare types. I do not have any of those HOWEVER I am still intrigued by an unknown mutation that came up which I am thinking in my lifetime they will know more about. I am a bit off from the physical test for an hEDS diagnosis so I just tell people I have HSD for now until more evidence comes to light. Prior to any of this, I had heard of EDS but I thought “theres no way that can be me I cant bend like a lot of these people can, and I dont dislocate joints”… Alas, I was soo happy to have a reason for my suffering.

And there ya have it.

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