In the age of “cancel culture,” where snap judgments and public shaming abound, the journey from stigma to compassion is often fraught with challenges. I live with attention-deficit/hyperactivity disorder and bipolar II disorder, am a wife to a person with hemophilia, and formerly co-owned a business run…
Columns
Speaking at the Hemophilia Federation of America’s Mild Matters Summit last year, former Hemophilia News Today columnist Shellye Horowitz shared how her treatment plan changed after she researched the genetic variant that caused her hemophilia A. Although she’s classified as “mild,” her factor treatment…
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…
I was over the moon when my first son, Julian, was born in 1996. My baby was here, and life would never be the same. When Julian wouldn’t stop bleeding after his circumcision, the pediatrician was visibly shaken. Seeing a doctor with furrowed eyebrows is disconcerting. The next day,…
In a recent conversation with my husband, Jared, he dropped a bombshell. If he were given the chance to be rid of hemophilia entirely for the rest of his life, he said he’d hesitate to take it. He’d actually miss his current life with severe hemophilia B. My…
Note: This column shares a woman’s self-described experience administering herself factor despite a doctor’s advice. Consult your doctor before starting or stopping any therapy. For the first time, I attended the Coalition for Hemophilia B’s annual symposium, held late last month in Dallas. It was an enriching experience where…
Every year at the First United Methodist Church of Belen, New Mexico, where I serve as pastor, I present a Bible to those graduating from high school and/or college. I select one of its verses that I feel connects with each specific recipient, and then I read the…
I never understood why graduating from high school was such a big deal. I grew up in a home of educators, and getting good grades and attending college were expected. Not pursuing higher education was never a consideration. I excelled academically and enjoyed my high school years; they were some…
My husband, Jared, and I have written about the limited supply of clotting factor IX in the Philippines, where we live. Lately there’s been a greater shortage of that factor, which treats hemophilia B patients such as Jared. That cast a shadow over our hemophilia community’s recent annual…
Last week, as I was leaving the Coalition for Hemophilia B’s annual symposium in Dallas, I found myself in an Uber headed to the airport. Usually, I wouldn’t discuss my bleeding disorders — hemophilia B and von Willebrand disease — with strangers, but a chance encounter…
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