Columns

Why I Don’t Always Think About Hemophilia

When I tell people I’m married to someone with hemophilia, I get different reactions. Some people are genuinely curious and want to know more about my husband’s condition. They’ll ask several questions about the hows and whys of his bleeds, and are often curious about treatment. On the other hand,…

What Does It Mean to Be Perfect and Whole?

Many years ago, friends told me about a workshop they attended, which addressed newly diagnosed patients with bleeding disorders. As they talked about the class, I agreed with everything I heard until one of the facilitators said that with a new diagnosis comes a sense of mourning. “Yes,” I…