Columns

I’ve been living with chronic pain for several years. When I’m asked whether I had an accident or trauma to my neck and back, my answer is no. But I think hemophilia indirectly triggered my pain. Years ago, when my youngest son, Caeleb, was in a wheelchair, I think…

Inheritance patterns in hemophilia are a common discussion topic for many reasons. Among the reasons that people seek information about hemophilia inheritance is their desire to better understand if their future children might be at risk for inheriting the disorder. Not only do people express concern regarding their children, but…

Two members of our local hemophilia community passed away in recent weeks. My husband, Jared, knew one of them, who succumbed to an iliopsoas bleed. The other was an older member of the hemophilia organization my husband works with. He had a stroke that led to bleeding in…

We all have a story about a time when our lives changed. Some memories elicit the best of times, while others recall deep pain. For me, the day my eldest son, “MacDonald the Older,” was diagnosed with severe hemophilia proved surreal. I had no idea what a bleeding disorder…

When you are around someone day in and day out, there are things that you don’t notice. A few pounds lost, a change in mood, or even a change in their daily habits. My 14-year-old son Caeleb has endured quite a bit of trauma over the years as a result…

Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. It happens to the best of us. The alarm goes off in the morning and we do NOT want to get out…

We have looked forward to this moment for years. No longer do we have to find veins or stick a 2-inch needle into a port-a-cath under the skin every day. All that is required is a subcutaneous injection every two weeks. The future is here, and while we exude…

Parenting is not easy. And when you have a child with a rare bleeding disorder such as hemophilia, it is exponentially more difficult. Not only are you dealing with the typical ear infection, cough, or broken wrist, you also must consider how hemophilia plays into the mix. My youngest son,…

We grow up hearing our mentors — women we respect and love — regularly complain about menses. Periods seem to be a fairly universal inconvenience and bother. However, I believe there is a fine line between inconvenience and suffering. Your period should not make you miserable. Movements to…

The new year is a wonderful time. To many of us, it’s a symbol of fresh hope and new beginnings. I greeted January with many dreams and the hope that they may come true. After an eventful series of moments leading up to New Year’s Eve, my husband, Jared,…