Discover and read the best of Twitter Threads about #ehlersdanlosawarenessmonth
Most recents (2)
Although I almost always keep my Tweets focused on weather, climate change, and related Earth system events, this thread is going to be a little more personal. May is #EhlersDanlosAwarenessMonth...and I have Ehlers Danlos Syndrome (hypermobility type). #hEDS (1/41)
Before continuing, I want to emphasize that I'm #NotThatKindofDoctor--I'm a physical scientist & science communicator, not a biomedical scientist nor a medical doctor. All the information and reflections in this thread are therefore either personal reflections... (2/41)
...or come from the perspective of a "highly informed patient." I do, however, strive to get the facts right, and offer links to various true experts in the clinical and research fields below. (3/41)
May is #EhlersDanlosAwarenessMonth. I can’t think of a better way to show how much EDS can impact someone’s life than by taking a picture with just some of the mobility aids, braces and devices that I need to use to keep myself going. 🧵 
Most of the supplies in that photo have only been acquired within the last few years. Because it took me almost a decade to get diagnosed with EDS. I went through years of disabling pain, fatigue, muscle spasticity and more, without knowing what I really needed to do to help me.
Years of misdiagnoses and shrugs from doctors. Years of being told to do things like exercise more and push through that ultimately caused more damage. Years of not having the option for insurance to cover equipment and braces because doctors didn’t think or know I needed them.
