Glasses as a Form of Unique Expression With Rare DiseaseLast week, I made the familiar journey from optometrist to optician, getting a new glasses prescription and ordering new frames. I have done this many times but always get excited...reactions2comments
Horses Helping Rare Diseases: Equine-Assisted TherapiesDecember 13th celebrates National Day of the Horse in the United States. On this day, people are encouraged to honor the economic, historical, and cultural contributions that horses have made...reactions3comments
Summer With Sun SensitivityI love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails, and nature, and I love being able to...reactionscomments
How to Observe Rare Disease Awareness DayI admit that I cannot resist the rare disease zebra branding. It's cute; zebras are close enough to horses to make my horse girl self happy, and unlike other rather...reactionscomments
What Is the Impact of Rare Disease Awareness Days?January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes to rare diseases: there are over 7,000 identified...reactionscomments
Into the Unknown With My Rare DiseaseI had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly bemused that this had entered my dreamscape and...reactionscomments
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 rest and activities. Like many people with rare...reactionscomments
Disability Pride Month With a Rare DiseaseDisability Pride Month is celebrated in July to commemorate the signing of the Americans with Disabilities Act (ADA) in 1990. As someone with a congenital rare disorder that causes physical...reactions1comment
5 Things About Mental Health and Life With Rare DiseasesMay is Mental Health Awareness Month. Like many in the rare disease community, maintaining my physical and mental health is ongoing work for me. Recently, I've been working to improve...reactions2comments
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...reactionscomments
