My Rare Disease Does Not Make Me a Burden...I 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 Disease...Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going...reactions27comments
Andersen-Tawil Syndrome Diagnosis: Full Circle...In 2009, my baby brother collapsed while running in a track meet. He was 16, and I already worked as a pediatric...reactions3comments
Zebras Can’t Be Tamed: Coexisting With a Rare Disease...Zebras 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 Therapies...December 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 Home...Living 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 Illness...Being 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 Patient...Whenever 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 International...As 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 Needs...When 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 Conference...Recently, 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 Matters...Recently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the...reactions3comments
Demystifying Primary Immunodeficiency Treatment...Primary immunodeficiency (PI) is a group of more than 400 chronic disorders, including many rare diseases, in which part of the body's...reactionscomments
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
Overcoming Infusion Anxiety for People With Primary Immunodeficiency (PI)...Living with primary immunodeficiency (PI) means your body has trouble fighting off infections. This is because your immune system, which is supposed...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 Disease...It'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 Home...Every 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 Education...Sending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope...reactions3comments
