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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 ...
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How I became a Zebra

From the Ehlers-Danlos Society: The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. If you'd like to learn more about the symptoms and subtypes of EDS, click this link:  What is EDS? I've been "clumsy" my entire life. Growing up, I developed awkwardly. I was tall and gangly, with knobby joints and long, distinct facial features. I struggled to gain weight. I felt tired all the time, and for most of my life, that was attributed to the fact that my home life was really shitty. By the time it got any better, I was a teenager and then my fatigue was brushed off as my being a hormonal teenager. I contracted Mono when I was 17, and then had a baby by the time I ...
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