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
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...reactions3comments
The Diagnosis Journey: Primary Immunodeficiency (PI)A long and difficult road may face people with primary immunodeficiency, also known as PI. It is not always easy to diagnose...reactionscomments
Understanding Primary Immunodeficiency (PI)Primary immunodeficiency, or PI, is a group of chronic disorders, including many rare diseases. These diseases are caused by problems in the...reactionscomments
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...reactions2comments
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the HomeEvery day, parents and caregivers of children with rare diseases face emotional, financial, and logistical challenges. These challenges force us to make...reactionscomments
Caring for a Child With a Rare Disease: Conventional Versus Specialized EducationSending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope...reactions3comments
Job-Seeking as a Caregiver for a Child With a Rare DiseaseFinding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for...reactionscomments
Why Caregivers Feel IsolatedBeing a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is...reactionscomments
Rare Diseases and Preparing for an EmergencyMedical emergencies are certainly no fun, especially when a rare disease is in the mix. However, being prepared for a potential emergency...reactions2comments
