Zebras Can’t Be Tamed: Coexisting With a Rare DiseaseZebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal parks, and safaris, they have never let themselves...
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still a...
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I had before my diagnosis. When my symptoms first...
Zebras Can’t Be Tamed: Coexisting With a Rare DiseaseZebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal parks, and safaris, they have never let themselves...
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still a...
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I had before my diagnosis. When my symptoms first...
Zebras Can’t Be Tamed: Coexisting With a Rare DiseaseZebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal parks, and safaris, they have never let themselves...
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still a...
Rare Diseases, Disability, and Self-Identity: I Am More Than My ConditionI didn't always see myself as someone living with a rare disease. For years, I fought to hold onto the life I had before my diagnosis. When my symptoms first...
Reach for the Stars! Why Media Representation MattersRecently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the beautiful and diverse LGBTQIA+ community. As a queer...reactions3comments
Xanadu I or Don't I? A Rare Disease Roller Skating OdysseyIn the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun...reactions1comment
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 elevated level of phytanic and pristanic acid in...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 to doctors, or was taken, and never really...reactions3comments
