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…

I met my husband on the golf course. Now, one of my greatest joys is watching my daughter learn to play at that very same course. It is where I feel most at home. The course is not a relaxing set of fairways we see on Sunday afternoon broadcasts with…

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…

I am a staunch advocate of equality. From a very young age, I was taught that all people are valuable, regardless of their race, ethnicity, social status, gender, or health status. I was brought up to believe that human beings have certain immutable and inviolable rights. Eventually, I learned…

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 am sitting in a favorite restaurant with the three great loves of my life: my wife and two sons. It is Valentine’s Day, and the place is packed and loud. But the noise fades into the background as I find myself captivated by the conversation at our table. We…

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 youngest son, Caeleb, came to the table the other day with a massive grin on his face. “Guess what?” he said. “I just received an email from housing at the University of New Mexico [UNM], confirming that I have a dorm room for the school year. Can you believe…

Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…