Osteoporosis and other bone disorders are more common in hemophilia carriers than in the general population, according to an analysis of U.S. insurance data. Its researchers also found a higher rate of bone problems among people with von Willebrand disease (VWD), another inherited bleeding disorder. “This study highlights the need…

I am a fierce advocate for my sons. I question doctors professionally. I say no and ask for other options. I have even found new research and treatment options to offer physicians. I do not give up and even risk being known as one of those moms. If I…

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 family entered the hemophilia community more than 23 years ago with the birth of my oldest son. During our time with the bleeding disorders community, my wife and I learned to access ports, treat and perform peripheral sticks, and negotiate difficult circumstances. We did not receive a manual titled…

Stress has been a constant issue for me. I struggle to manage it, but I’m improving. If I could jump into a time machine and travel back in time, I would tell my younger self to chill out and learn how to breathe. I am a self-employed digital marketing consultant.

In April 2018, I began writing this column. Over the four years that I’ve shared stories from my heart, I cannot believe that my family has endured many bad moments associated with hemophilia. Yet I’ve also chronicled the joyous times we celebrated, even in the middle of overwhelming darkness.

Raising two sons with hemophilia has taught me to be flexible. I have learned that my best attempts to make plans can be thrown out the window in an instant at the onset of a bleed. Treating a bleed, going to the hospital, or accommodating a rigorous infusing schedule take…

I have a confession: I hate to self-infuse. I am really bad at it. Well, at least most of the time I am. The multitude of blown and missed veins over the past few years have synthesized to wholly deflate my confidence with this critical skill.  …

The National Center on Birth Defects and Development Disabilities has an online booklet that helps hemophilia patients and their families construct a plan in the event of an emergency. MORE: Initial results from phase 3 hemophilia trial of Emicizumab in children looks promising The plan focuses on all…

My husband and I are both United Methodist clergy, so our children are called PKs (pastors’ kids). Some PKs earn reputations for misbehaving, giving their parents plenty of gray hairs. Other PKs are kind and considerate, attend youth groups and Bible studies, and are seen as model children. My sons…