This morning, I took my 16-year-old son, Caeleb, to physical therapy at Carrie Tingley Hospital in Albuquerque, New Mexico. He continues to experience recurring pains from past internal bleeding episodes in his right knee and ankle. The goal is to find the source of the pain and a…

There is a moment in every person’s journey when they realize that their story is messy, complicated, and imperfect — and it holds more power than they ever imagined. Living with a bleeding disorder often means navigating a world that doesn’t fully understand what we face. We can feel isolated…

XaTek announced that it has raised $9.1 million to advance the development of ClotChip — a portable test designed to rapidly analyze, using  a single drop of blood, the ability of a person’s blood to clot. The capital was raised in a series A financing round, which marks a company’s first significant…

Sixteen years from symptoms to diagnosis. This statistic is quoted incessantly among women with bleeding disorders, describing the treacherous diagnostic journey we often endure. But what many don’t realize is that this figure came from one study of 75 women diagnosed with von Willebrand disease (VWD) who were registered…

I recently scheduled a consultation with a psychiatrist after years of trying to manage my mental health without professional help. Since I was a teenager, I’ve dealt with chronic mental health issues that manifested in bothersome ways. In the past, I had difficulty sleeping, disordered eating, and fluctuating moods. I…

My recent columns have focused on my experience at the National Bleeding Disorders Foundation’s (NBDF) annual Bleeding Disorders Conference, held Aug. 21-23 in Aurora, Colorado. I wrote about fun times with colleagues and new friends, and offered my gratitude to salespeople who truly care. I shared that my…

CSL Plasma is donating $125,000 to the American Red Cross in an effort to help lessen the burden of natural disasters to local communities in the U.S., including areas that affect plasma donors and employees involved in the manufacturing of plasma-derived therapies. Plasma protein therapies are one of the…

With my youngest son, Caeleb, graduating from high school this Saturday, I can’t help but ask, “Did I do enough for him?” While celebrating the end of one era, there’s always something ahead that grabs our attention. Sometimes, what we face is positive and propels us on to our new…

My husband, Jared, and I are currently in the process of looking for preschools for our daughter, Cittie. She’s almost 4, but sometimes she acts and speaks as if she’s much older. Cittie often tells us that she wants to go to school. Although we refuse to rush her…

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…