Shawn Decker...His humorous memoir, My Pet Virus, which details his experiences growing up with hemophilia and HIV, was published
What Is Power Posing?...symptoms of chronic, rare conditions like hemophilia, sickle cell disease, and more....reactionscomments
Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...Having moderate hemophilia doesn't prevent me from doing most of what I want to. I could...reactions1comment
Community Views: The Biggest Misconception About My Rare Disease...It can be enraging to hear someone tell you how you feel or what you have. “It’s just...reactionscomments
What Is a Rare Disease?...Some have been known for hundreds of years, like cystic fibrosis and hemophilia. Others have only recently been discovered....
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...Since I have moderate hemophilia, I treat "a la carte."...reactionscomments
Bowled Over Again (in a Good Way!): Being Proactive With My Health Goals...My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia...reactionscomments
Myths and Misconceptions About Rare Diseases...Cystic fibrosis, hemophilia, and Gaucher disease are examples of genetic rare diseases that may be diagnosed in children....
Common Tests and Tools for Diagnosing a Rare Disease...The lab checks it for genetic mutations that can cause inherited diseases or defects, such as hemophilia...
The Ethical Necessity of Truthfulness in Health Advocacy...Whether you belong to a rare disease community or not, reflecting on your role as an...reactionscomments
Finding Resilience and Purpose After a Rare Disease Diagnosis...As I reflect on my current state, I ask myself questions that guide my path. reactionscomments
The Diagnostic Maze: Why Was I Misdiagnosed?...This can help them see a pattern of recurring attacks. It is important to know how reactionscomments
