Shawn Decker

There's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once a week. Until now, I have always treated...

When I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a trilogy of articles. Or physical therapy. But what...

My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and not-so-slight bleeding into that joint over nearly 5...

I recently wrote an article, Groin Older: Aging With Hemophilia, where I described my life with the bleeding disorder, hemophilia. My first pulled groin muscle was the star of the...

A special trip to New York City was a little over 24 hours away. I was going to honor one of my favorite humans, Georgia Arnold, for her contributions to...

As a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a more "normal" life possible, or at least one...

The most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major bleeding into the joint, I have very little...

Humor plays a huge role in my life. I'm pretty open about having hemophilia A, and I rarely miss an opportunity to make my friends laugh. For instance, I recently...

Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are...

Although hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that can come with mine. Having just turned 48...

There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was different about a character. WHAT IF...Spider-Man was bitten...

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...

Life with a bleeding disorder makes getting around a whole lot harder as I age. I have moderate hemophilia and consider myself lucky that I only have one recurring problem...

In the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun...

I 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...

It's that special day of the year again. You know the one. The day when all of your friends bestow many a gift and regale you with all the knowledge...

Disclosing a medical condition is tricky territory because we always have to be prepared for the worst possible reaction. Sadly, the scale of what that means depends on what you...

Living with a rare medical condition is a multi-faceted endeavor. First, you have the medical reality, where your own acceptance is imperative in reaching your health goals. That journey alone...

Greetings! 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...