Walking a Fine Line as a Squeaky Wheel: Communicating With DoctorsI once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer...
How to Manage Fluctuating Symptoms With Rare DiseaseHave you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1...reactions3comments
Pacing Yourself, Pushing Yourself: Managing Energy With a Rare DiseaseI am beginning this article on my commute train to work, starting another work week after a typical weekend for me of...reactionscomments
Featured forum Dietary ChangesHi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an...reactions12replies
Featured story It's Just the Way You AreI just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went...reactions3comments
