“You might have to go on dialysis again—I don’t want to sugarcoat it for you,” my doctor said to me as we spoke in the inpatient nephrology wing of the hospital. Weeks earlier, I had started spilling massive amounts of protein in my urine, and my creatinine level skyrocketed. I was inpatient because I was getting a drug called Rituxan. Rituxan is a drug normally used for non-Hodgkin lymphoma. Out of desperation, my doctor and I decided to try a round of Rituxan because it was discovered that tre...
TREND Community is proud to introduce TREND Ambassador, Antonio Maltese: “My name is Antonio and I am a 25-year-old person living with 3 rare diseases. I study political science with a minor in German at Virginia Commonwealth University in Richmond, Virginia, although currently, I’m on medical leave of absence with 15 credits left.” The combined total number of Americans living with a rare disease is 1 in 10, which might seem somewhat contrary to the nomenclature; however, each of the 10,000 r...
When I was nine years old, I woke up one day with heavy swelling in my face. At first it was sporadic, but when fourth grade began, the swelling happened more frequently. Teachers thought I was just tired: “You need to go to sleep at a decent hour—8:00pm, right after MacGyver.” My mother took me to our pediatrician. He took a urine sample and found that I was spilling large amounts of protein. We were referred to a nephrologist at the Children's Hospital in Chicago. The nephrologist performed ...
TREND Community is honored to introduce Andrew Wright, a person living with myotonic dystrophy type 1 (DM1). Like all of those living with rare and chronic illness, Andrew is so much more than a diagnosis. His story is one of perseverance in the face of challenges. To understand his journey it’s important to look closely at this rare disease. DM1 is a rare, multisystemic, inherited form of muscular dystrophy that affects an estimated 1 in 2,100 people, or more than 3.6 million individuals acros...
TREND Community is honored to announce that Monica Converse has joined our team as Medical Writer. Monica brings experience from her work as a science instructor coupled with an education in science and biology. At TREND, the combination of her experience and education will provide our team with written communication that matches the strength of our research. Monica received her Bachelor of Science in Biology from The State University of New York, graduating cum laude. From there, she went on t...
TREND Community is honored to announce that Angeni Cordova has joined our team as Project Manager....
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