Reminder: Appearances can be deceiving. Things may not always be as they seem. All about my invisible symptoms from Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
The research that led me to my current diet: what I read, what I learned, the food I’m eating, and the improvements I’ve seen, from March to May 2018.
On relationships, insecurities, the power of words, and dating with both visible and invisible symptoms. Spoiler: tons of oversharing about my skin.
GI and gluten-related disorders, nutrition, & a personal update: 2017 and my most recent diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
On Hypermobile Ehlers-Danlos Syndrome (hEDS) and the proposed unified set of criteria for a single diagnostic entity, 2017 updates from the American Journal of Medical Genetics.
Physician Lack of Knowledge = Patient Suffering. Misconceptions about Ehlers-Danlos Syndrome run rampant, and one majorly underestimated symptom is chronic fatigue. Personally, I'm 100% certain that I'm already tired tomorrow.
Doctors frequently confuse "flexibility" and "hypermobility," and the misconceptions complicate diagnostics and delay patient care. How does Ehlers-Danlos Syndrome look clinically? Here's how EDS looks for me.
Invisible illness: Just because you can't see it, doesn't mean it isn't there. Living with Ehlers-Danlos Syndrome is hard enough, but the insufficient knowledge of EDS in the medical community, combined with the societal intolerances for invisible disabilities, makes every day so much worse. EDS does have a very distinct clinical picture, but it's not the picture that's well-known presently. The lack of awareness around EDS and its multi-systemic presentation needs to change. In honor of all the zebras out there, here are 30 things people may not know about my invisible disabilities.