We can Achieve Earlier Diagnosis and Understanding with proper Awareness

Awareness truly is key. So is a proper diagnosis and the earlier the better!

Just a small donation will go a long way to helping me meet my goal for The Ehlers-Danlos Society.

My journey has been a long one. I've been in and out of hospitals. I've dealt with doctor after doctor, question after question and of course diagnosis after diagnosis. It wasn't until about 2016 that I recieved my (1st) diagnosis of Ehlers-Danlos Syndrome. I went about my life ignoring this initial diagnosis as the physician didn't inform me of what this new diagnosis was or what I should do. They literally told me to, and I quote; "come back when you have more rheumatologic problems because there's nothing I can do". Wow. So I was afraid...and decided to ignore it and go about my life as if I heard nothing. I'd been dealing with EDS symptoms since my youth. I had no idea what was happening to my body, why I was sick and needing so many surgeries, or having so many injuries, healing issues, etc. Two years later my PCP sent me to another specialist who diagnosed me with EDS (again now a 2nd time) as well as other comorbidities after performing multiple tests. They however, unlike the first physician, gave me tons of information and referred me to multiple physicians and had an action plan for me. This time I suddenly realized how real this EDS thing was. I then had to do my research.

I don't want anyone to ever have to go through what I have. A physician diagnosing EDS then saying they cannot help you and sending you off to fend for yourself. That's scary! Not only that but to go out asking physician after physician what EDS is and they have no clue...that was difficult! Now, here we are 4 years later and already more are understanding and aware of EDS and HSD which is so very wonderful!

Why is this important? We all want the best quality care and this can only happen with proper education and awareness of this Syndrome. I cannot tell you how many times the doctor and nurses as well as surgeons and anesthesiologists knowing I have EDS and what subtype (hEDS) have practically saved my life in surgery as well as in the hospital. There are times that when physicians have not known...and I have ended up with dislocated joints, burst veins, dehydration, whiplash, scary palpitations, severe traumatic pain, and so much more! When physicians are made aware of my EDS and what my personal symptoms and comorbidities are, they are able to take proper measures in order to take care of me.

An early diagnosis goes a long way. The earlier the better. Treatment can begin earlier and preventative measures can be taken much earlier to help for the future.

The EDS Society has been working very hard over the past year to help doctors and patients in spreading awareness and it is super wonderful! I want to help continue spreading awareness through this year of 2020 so that our symptoms can be more understood, there can be better treatment options open and help in the medical field.

Thank you guys so much for reading the short version of my journey. Every little donation helps! If you can't donate but you'd like to share this post, that helps a ton! Together we dazzle! #zebrastrong