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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…

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…

Many young people enter adulthood with dreams and goals in mind. The burning desire to attain these goals drives them to carry on through hardships and challenges. But for people with chronic illness, achieving goals can be harder, as they may face more obstacles related to their condition. It may…

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…

I have a number of friends working as financial advisors. From time to time, they offer me life insurance policies, stock market deals, and other similar investments. As a young mom and businesswoman, I am right within their target market. I take interest in all sorts of financial tools…