Hemlibra (emicizumab-kxwh) has been a wonder medicine for many hemophilia patients, including my youngest son. Among the benefits that he receives is a respite from internal bleeds. He now infuses every other week instead of every day. We no longer focus on numbers regarding inhibitor levels, but pray…
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People are required to earn a certification or license for numerous activities. To drive a vehicle, a person must secure a learner’s permit or driver’s license. To become a lifeguard, a person must go through training to earn a certification. Even working a part-time job in the food industry…
“Beep, beep.” I leap out of bed at 10 a.m. on a Saturday. My plans for the day include geocaching, a wonderfully nerdy hobby in which I hike through forests and urban areas to find hidden boxes. The GPS on my phone leads me…
I was recently browsing social media when I randomly clicked on a suggested article titled “34 Things You Need to Give Up to Be Successful.” As an entrepreneur, I get lots of suggested links to articles about success in business and life. I reflected upon what I had just…
When I was young, I learned how to be a caregiver for my grandfather. My mother, sister, and I lived with my grandparents for longer than I can remember. I had an incredibly unique relationship with my mother’s parents, particularly my grandfather. When I was about 13, he had a…
Doctors, nurses, hospitals, and clinics are simply part of life with a rare, chronic condition such as hemophilia. Many people in the bleeding disorders community learn early on that speaking up for themselves and their loved ones is crucial to their care. Over the years of raising two sons with…
My husband, Jared, and I are quiet, introverted people. We’re both averse to noisy crowds and overstimulating activities. Our idea of a good time is immersing ourselves in hobbies or getting away to a weekend nature retreat. Although my Myers-Briggs Type Indicator is ENFP, a personality classification that stands…
The last time my youngest son spent the night in a hospital due to a breakthrough bleeding episode was in February 2014. As years passed, his health continued to improve, and life returned to normal. The only difference between my son and the boy next door was the…
Before cellphones, memorizing phone numbers was a necessity. Racing home to make a phone call on the landline was how I made plans with friends and scheduled appointments. With smartphones, I can make a call with the touch of a button, no matter where I am. Although I no longer…
My husband, Jared, has a complex medical situation: He has severe hemophilia B and a seizure disorder, which both greatly affect his daily life. He recently started online consultations with a psychologist, a psychiatrist, and a neurologist to help him work through his seizure disorder, which was caused by a…
