My Rare Disease Journey With HemophiliaGreetings! My name is Shawn, and I'm happy to be a contributing writer for RareDisease.net. Maybe you are also living with a rare medical condition. Or perhaps a loved one...
How I Rate Various Pains With Multiple Rare DiseasesI don't remember what it's like not to be in pain. On a good day, I might say I'm "without pain." But honestly, I say that because I get tired...
Building a Caregiving Team: Finding In-Home HelpLife with a rare disease can require extra at-home help and support. This care varies by person and ranges from skilled hands-on work to running simple errands. Handling all of...
My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment CenterI used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from a nosebleed or some type of...
Common Tests and Tools for Diagnosing a Rare DiseaseIncorrect or delayed diagnosis of rare diseases is common. Because so few people have a particular rare condition, doctors you go to may have never seen someone with your condition...
Am I Too Chill About My Rare Disease?Recently, I had lunch with my fellow RDs (Rare Diseasers). These are some of my friends who also live with hemophilia. Since we live more than 60 miles apart, we...
Community Views: The Biggest Misconception About My Rare DiseaseHaving a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do not know your story. But it is valuable...
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations. Here are a...
