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What was my reaction the first time I encountered a comprehensive hemophilia treatment center (HTC)? Relief! I couldn’t believe the resources that were available to those fortunate enough to be treated at one. With quality care, emotional and employment counseling, physical therapy, dental health, and school assistance, the HTCs seemed…

As of this writing, my family and I have been in quarantine for over a week because my husband, Jared, has COVID-19. We were anxious after he tested positive,  because we didn’t know what the outcome would be. Thankfully, he’s doing much better, and his symptoms have subsided. He…

I am a pastor and a parent of two sons with hemophilia, a rare, genetic bleeding disorder that occurs in about one in 5,000 male births. My youngest son has a high-titer inhibitor, which means his immune system has developed antibodies to factor replacement. He’s also had an allergic reaction…

My youngest son, Caeleb, is a sophomore in high school. Being with his marching band “people” makes him very happy. Caeleb plays the trumpet, but he also plays the synthesizer in the percussion pit (which performs from the sideline) during marching season. I am grateful for the band director’s…

Last week, my husband, Jared, tested positive for COVID-19. He had been experiencing a tickle in his throat for the last couple days but didn’t have other symptoms. Then he woke up with a persistent cough and decided to get tested. As we were driving to…

I am convinced that many of us live for “aha” moments. I’m referring to those times when an unexpected realization occurs that either confirms or changes the course of one’s life. These moments are often welcome guests, but sometimes they rage like a fierce hurricane, and the best we…

Every family member has a role. Parents usually assume the roles of providers and nurturers, making sure their children have a roof over their heads, food to eat, and plenty of love. Siblings each bring their unique personalities to the home. Some are playful and fun-loving, while others may be…

There are multiple types of medical trauma. A medical emergency can be traumatic. Chronic medical issues can be traumatic. Struggling to obtain a diagnosis and treatment is traumatic. I believe that one of the most consequential results of suffering medical trauma is the subsequent refusal to engage with medical professionals.

Now and then, I think about my own health. I wonder if I’m caring for myself enough, or if my husband’s illnesses might be standing in the way. When health issues unexpectedly crop up for him due to his hemophilia or seizure disorder, certain worries are inevitable. What if…

Over the past few years, my youngest son has developed pain in joints that were damaged by internal bleeding episodes. As a result, he struggles some days to walk due to an arthritis-like ache. His hematologist prescribed the medicine Celebrex (celecoxib) to help with inflammation, which decreases…