As a “HemoWife,” I’ve had the privilege of connecting with numerous people in the hemophilia community. While our shared experiences allow us to create a strong bond, one important topic often remains unspoken: the social and mental maladjustment that some people with hemophilia may face due to…

I have a version of Pandora’s box. Fortunately, the box doesn’t see the light of day. I keep it on the top shelf of my closet, hidden behind extra pillows that are stored away for months on end. The box contains years of pain, grief, sorrow, and buckets of tears.

As my husband, Jared, and I grow deeper in our marriage, the reality that we will spend our entire lives with chronic illness becomes increasingly clear. Jared has severe hemophilia B and a seizure disorder, which I learned about when we started dating. Meanwhile, I was diagnosed with…

I recently came across the idea that people with disabilities (PWDs) should be held to the same standards as everyone else in terms of productivity and output. As a PWD and an entrepreneur, I wanted to understand the thinking behind this. In a social paradigm that upholds fairness as one…

I watch my son put pencil to paper and cannot help noticing the change in his face. The tension from just a few minutes ago gives way to peace. The minute he draws the first line on the page, he’s transported into a world that offers him rest and spiritual…

My husband, Jared, and I have maintained a small garden on our balcony ever since we moved into our new home. We started out with just a few potted herbs, and as time went by, we expanded our collection to include some ornamental plants and flowers. Jared is a wizard…

My youngest son, Caeleb, is a sophomore in high school. He lives with severe hemophilia A, along with the complication of antibodies that inhibit the infused factor’s ability to stop bleeding episodes, and chronic pain is proving to be a significant issue for him. Caeleb’s right knee and ankle…