Accepted
Since I started this journey, I've held close a sense of responsibility to not let others suffer unnecessarily. It has been truly eye opening to see the amount of intelligent, capable, well-trained medical professionals that let HSD/ EDS patients fall through the cracks. Ehlers-Danlos Syndrome is a genetic disorder on the Hypermobile Spectrum of connective tissue disorders. There are several types of EDS that vary in severity, systems affected, and genetic deletions or malformations. "Typing" these conditions is important to the patient because it can help their medical team and support system plan more effective treatments and maintenance routines. This is why advocacy and education are important. When I figured out that I may have this disorder, I immediately joined the Ehlers-Danlos Society. They're a world-wide advocacy network that provided me enough support and access to information to feel comfortable talking to my Dermatologist about this being a possible ...