Lessons Learned in Navigating Medical DebtWith any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on...reactions6comments
Disclosure in the WorkplaceWhen it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have...reactions10comments
My Approach to Taking MedicationsIn my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually...reactions5comments
Crafting Hope: How Art Helps Me Navigate Rare DiseaseLiving with a rare disease can be exhausting and monotonous. The uncertainty of living with a chronic condition can cast a shadow...reactions6comments
Exploring Non-Drug Pain Management OptionsChronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and...reactionscomments
Fighting Misconceptions Can Save Lives: Rare Disease SurveillanceMisconceptions abound amidst many health conditions – particularly rare diseases – and even among the medical treatments available to prevent or manage...reactionscomments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?Let’s talk about awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a...reactionscomments
Coordinating Care With a Rare DiseaseMany general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get...reactions1comment
Living an Authentic Life With a Rare DiseaseI was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting...reactions5comments
My Rare Disease Does Not Make Me a BurdenI recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of...reactions1comment
I Thought They Understood: Living With An Invisible DiseaseRecently, I thought I had found a group of friends who would stick by my side, who understood what I was going...reactions27comments
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...reactionscomments
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...reactions3comments
Taking Control of Your PI Treatment at HomeLiving with primary immunodeficiency (PI) can feel like a life managed by the schedule of your infusions. For years, intravenous immunoglobulin (IVIG)...reactionscomments
Facing a Terminal IllnessBeing diagnosed with an incurable rare disease can be an incredibly difficult experience. It may affect you physically, emotionally, and spiritually. It...reactionscomments
Becoming a Do-Not-Resuscitate PatientWhenever I encounter new medical providers at any level of care, they are often surprised to discover that I have a do-not-resuscitate...reactionscomments
Rare Disease InternationalAs a person living with a rare disease, it can be difficult to find other people who also suffer from the same...reactionscomments
Disclosing Rare Disease NeedsWhen living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually...reactions2comments
Art As Rare Disease Advocacy I have only been living with narcolepsy since my college years. When I discovered what kind of rare disease I had, at...reactions7comments
My First Rare Disease ConferenceRecently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora...reactions2comments
