Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with essential information about treatments and future methods of living with bleeding disorders. Nothing will replace great friends getting together…

When I think back to the early days of raising my first of two sons with hemophilia, I see how I have changed. Back then, I was a scared young woman trying to figure out what the diagnosis of a rare medical condition meant. I found myself living…

I remember the first time I put my hand in your hand. You seemed to smile out of a sense of familiarity. You knew me in a way that knocked me to my knees. Your tiny hand filled my palm with delicate fingers and fresh new strength. Your touch seemed…

The back-to-school season is one of my favorites. Shopping for new school clothes, finding the right backpack, and getting school supplies are part of the tradition. As my son Caeleb enters his freshman year of high school, it looks to be the start of a vastly different year. There is…

The U.S. Centers for Disease Control and Prevention (CDC) is seeking input from people who live with pain, as well as their caregivers and healthcare providers to better understand values and preferences related to pain management. This information will help the CDC update and expand the…

My husband, Jared, recently decided to stop cooking after he was injured during an epileptic seizure. It was a hard decision because he enjoys cooking, and food brings him genuine happiness. He enjoys preparing the ingredients for our daily meals. In his free time,…

A couple friends came over for lunch last weekend, and one started talking to my youngest son, Caeleb, who is 14. Caeleb and I were both confused by this, because the conversation didn’t make sense. I realized that my friend had mistaken Caeleb for my older son Julian, who is…

Monsoon season has begun here in the Philippines. Every time I drive in downtown Manila, I’m reminded of a family trip last year to Tagaytay, a popular tourist destination. My husband, Jared, and I wanted to get out of town for our first anniversary, but the trip turned out…

As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from dear friends who struggle with medical issues like mine. Why then do I find it hard to take advantage of…

When people find out my sons have hemophilia, their reactions often make me uncomfortable. “You are so brave, Cazandra,” one might say. “I don’t know if I could do it,” another might add. Friends and family members often place me on a pedestal by saying that my strength and courage…