I start every year by promising to make meaningful changes in my life. I hope to lose weight, exercise more, live a healthier life, and be a better parent to my children during their bleeding episodes. These New Year’s resolutions sound great, and when I am in my “safety…

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…

Advocacy is a beautiful thing. Many people find it fulfilling because it’s a way to show kindness to others while championing something close to one’s own heart. But advocacy isn’t always easy. I’ve come across some disability advocates whose dedication to the cause was tested by their experiences…

I am an advocate, born and bred. Being an advocate is simply part of my DNA. Even when I was a young girl, seeing someone be mistreated or experience prejudice angered me. The years have taught me how to fight my battles and fight for others, but when my first…

Chronic pain and a reliance on pain killers remains high among adult men with severe hemophilia B after two years on preventive treatment with extended half-life recombinant factor IX — even with a lesser bleeding frequency and fewer repeated joint bleeds, a real-world study from Ireland reports. These findings…

I live with depression, anxiety, and chronic pain, and I rely on talk therapy at least once a month to keep my emotional well-being in check. The process of talking through my emotions and trusting a professional to give me new perspectives on the issues I deal with brings…

I use a handicapped placard for my youngest son, Caeleb, who has hemophilia and deals with complications from the clotting factor used to treat his illness, which causes him to have pain. Caeleb, 15, participates in his school’s marching band and practices after school four days a week. At the end…

People with hemophilia are nearly four times more likely to experience sexual problems than are individuals without bleeding disorders, according to the results of a new international survey. The survey found that problems with sexual intimacy in patients with hemophilia were associated with older age, experiencing acute or chronic pain…

My youngest son, Caeleb, is embarking on a new adventure and studying for his driver’s test. Once he earns his permit, we’ll take him to the church parking lot for practice. Caeleb is thrilled at the thought of driving to school and band rehearsals. He is growing up and realizing…

My chronic pain is not caused by a bleeding disorder, but it does give me perspective on the pain my youngest son, Caeleb, endures from hemophilia. Friends stopped by on a recent afternoon to meet our new puppies, and I shared a homemade pie that was fresh from the oven.