I finally figured out why my body seemed to be acting against me.
I was 20 years old when I was first diagnosed with Ehlers-Danlos syndrome (EDS). I was in my third year of college and was studying pathology. As I read a short paragraph in a long textbook about EDS, I knew right then and there, that it was time to go to a geneticist. I made an appointment with my primary doctor, hoping for answers; unfortunately, they told me they had no idea what EDS was, I most likely didn’t have it, and I should just go to the geneticist. Once I was evaluated by the geneticist, he knew right away that I had hypermobile Ehlers-Danlos syndrome (hEDS).
This now explained why my shoulder was falling out of its socket every couple of days at 18 years old and had to have labrum repair surgery. It explained why I was constantly bruising, fainting, and had extreme joint pain throughout my whole life. At 9 years old I had numerous MRIs on my brain, as I experienced severe migraines(still get them), only for the MRIs to show no reason to why they occurred. It explained the way I sit in a chair( frog style), it explained my ability to dislocate my knees on command, and my velvety soft, yet stretchy skin. It used to be a joke in school how stretchy my skin was; no one could understand how tiny I was, with such low body fat, yet could stretch my stomach, arm, face, etc skin out two-three inches from my body.
I am now 26, and unfortunately now have bilateral shoulder repairs, both of which I have a full range of motion again, and seem as if the surgery was never done (no dislocations though thank God). I experience dysfunction of my SI joint, and my hips are constantly out of line (I have figured out a great way to get them back in line: I push against a wall with both feet, and the resistance helps).
I have a very demanding job, as I am a clinical laboratory scientist in heart and vascular surgeries. My job requires long hours, mandatory overtime, and call, so I knew I needed to find ways to manage my pain, as I do not find much time for rest. In 2016 I decided to study Herbalism, and Herbal Medicine, as a way to help myself, and others with pain management. I have found that natural methods and a holistic lifestyle have transformed my life, and have transformed my body when it comes to pain management. I have also found many natural/alternative treatments for mental and psychological health as well, and I am making it my duty to share this information with the community. I am so grateful for The Ehlers Danlos Society, and will continue to spread awareness! We are zebra strong!