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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments2 comments
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...Reactions0reactionsComments0 comments
