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...4 min read
My Chronic Pain Scale: Describing Pain 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...4 min read
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...4 min read
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...4 min read
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...4 min read
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...4 min read
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...3 min read
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. Sticking up for yourself in social situations is a journey. Here are a...3 min read
