I am a musician who has played in orchestra pits, wind ensembles, chamber groups, and orchestras. I even played antiphonal oboe one Christmas! Music is powerful. It transforms you and allows you to escape for a few hours from the regular happenings of the day. However, most people…
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I took my youngest son, Caeleb, to the train station near our home this morning. He rides from our little town to downtown Albuquerque, about 30 miles from our house, to the University of New Mexico campus, where he’s a student. He has hemophilia and chooses not to drive.
For a long time, I didn’t think about exhaustion or how it would occasionally surface in my marriage to someone with hemophilia. As someone with attention-deficit/hyperactivity disorder (ADHD), I tend to function well in high-pressure situations. Urgency sharpens me. When there’s a problem to solve or a…
I am a big list maker. Each day I start with a list of tasks that I need to accomplish. I find it gratifying to cross through each item once I’ve completed the job. Grocery lists, errands, and meal ideas are some of the elements on my agenda. I also…
Our world is changing. Shelves are partially stocked, hugging friends is discouraged, church services are online, and we study and work remotely. We crave connection. Things will improve eventually, but that seems a lifetime away. Finding routines and things in our lives that are “normal” is not always easy,…
BAY 94-9027, developed by Bayer, is an investigational treatment for severe hemophilia A. It is a PEGylated molecule of recombinant factor VIII in which the B-domain, a region within the factor, is deleted. The therapy is produced using a baby hamster kidney cell line (BHK-21), and has…
My husband, Jared, was 11 when hemophilia changed the course of his life. He wasn’t doing anything reckless — just being a boy, jumping around on his bed. Then came the misstep, the fall, the blow to his head. He brushed it off, not realizing that a slow, dangerous…
I grew up outside the city limits of Houston. My childhood was idyllic. I am one of the few who say my high school years were some of the best of my life. When I went to college, I attended a university on the other side of town. I…
The healthcare insurance company BCS Financial has partnered with the National Hemophilia Foundation (NHF) to improve care quality and cost for people with hemophilia. BCS Financial provides services primarily for Blue Cross and Blue…
I met with my mighty warrior’s new principal and school nurse last week. I took my presentation, and thanks to the Hemophilia Federation of America, I was ready to teach and answer questions. Most importantly, I wanted these individuals to feel at ease and not scared of my son.