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We find ourselves in a delightful spot regarding hemophilia. My youngest boy’s last internal bleeding episode occurred nearly eight years ago. Using prophylactic treatment, we’re managing his bleeding disorder well. My older son, who struggled with breakthrough bleeding episodes despite using a recombinant factor VIII product, now finds…

It’s hard to believe that my 16-year-old son, Caeleb, is moving into adulthood. He is not approaching adulthood, but moving toward it, and he still has much to learn about managing hemophilia. At a recent annual appointment at the hemophilia treatment center (HTC), a nurse quizzed him about what…

In Chinese philosophy, the concepts of yin and yang represent two opposing forces that come together in synergy to complement each other and create a perfect balance. Their symbols are interconnected black and white halves of a circle, each with a dot of the opposite half’s color. It perfectly…

January is my three-year “clotaversary,” a holiday I celebrate every year after surviving a life-threatening situation during a major surgery. I have von Willebrand disease (VWD) and hemophilia B, and without treatment, I’m at risk for dangerous bleeds during surgical procedures. In 2019, I needed a radical…

Last weekend, I met with some of my pastoral colleagues at a restaurant in Santa Fe, New Mexico. The food was terrific and we dined with the mountains behind us. I looked out the window to see several ski runs etched in the slopes and thought, “My goodness, it doesn’t…

I enjoy family vacations. While we don’t necessarily take yearly trips, we cherish our adventures. My husband and I want to take a trip to Washington D.C. with our son, Caeleb, 16, who is a history buff. We have put the trip on hold because of the COVID-19 pandemic,…

My husband, Jared, recently celebrated his birthday. Hooray for 29 years of fighting and surviving! He opted for a low-key celebration at home with me, our daughter, Cittie, and her nanny. Because it was a weekday and I had to work, we didn’t have much time to do anything particularly…

Imagine you are in an emergency room with a life-threatening bleeding problem. How would you convince an ER doctor that you are a woman with hemophilia if they don’t think women with hemophilia exist? I have both von Willebrand disease (VWD) and hemophilia B, a less common form…

Next week, my youngest son will celebrate his 16th birthday. It’s hard to believe that so much has occurred in his young life. He has experienced the heartache of living with a bleeding disorder, and has often been paralyzed by his fear of needles. He has undergone 16…

Teaching teens to take control of their bleeding disorders must begin early. I believe in empowering my sons with the information they need to go out into the world. When they were toddlers, I talked about the different items they’d need when we did infusions, and they began to…