Our baby girl, Cittie, is 18 months old. She’s feisty and curious about the world around her. Currently, her favorite words are “up,” “open,” and “close.” She likes being carried so she can observe things from an adult vantage point. She also wants to touch and tinker with every object…
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At times I struggle with documenting my journey as a caregiver for a loved one with a bleeding disorder. I can’t offer medical advice because I am not an expert. The most I can do is share my experiences and hope that something I write might speak to someone…
#ISTH2020 – Hemlibra Continues to Show Favorable Safety Profile, Early Phase 3b Trial Data Show
Note: This story was updated July 20, 2020, to note that Hemlibra binds to activated FIX and FX, rather than to FIX and FX. When given as preventive treatment to avoid spontaneous bleeds in people with hemophilia A with inhibitors, Hemlibra (emicizumab) continues to show a…
The past few months have been filled with change. My family and I moved from Texas back to New Mexico, my husband and I started new jobs, and our youngest son, Caeleb, begins high school in a few weeks. Our home is finally getting into a new rhythm and…
When my husband, Jared, and I started dating, I was aware that he has hemophilia B and epilepsy. Not long after that, someone close to me gave me a gratuitous warning about dating someone with chronic illness. They told me I would face more challenges and…
The Roles We Play as Caregivers
Two weeks ago, my family moved back to New Mexico. Today, I find myself attempting to bring order to my office. I started matching books with the subject matter and made sure that each volume found its right place on my bookshelves. I held my Doctoral thesis in my…
I am a sucker for routine. Spontaneity does not come easily to me because I do not like surprises. I missed routine when my now 14-year-old son, Caeleb, was younger and hemophilia seemed to be the ever-present, unwanted guest in our lives. I joked that I missed boring…
Social media is one of my guilty pleasures. Whenever I find myself with free time, I open Facebook and mindlessly scroll through the endless news feed. I become immersed in whatever I stumble upon, be it funny memes, snippets of friends’ personal lives, or criticisms about society. As a graduate…
Some moments in my life are ingrained in my soul, such as the births of my sons, my wedding day, the mornings when each of my parents died, and when I heard doctors utter the word “hemophilia.” These are points along my journey that changed the trajectory of my life…
Over the past few months, my husband and I have been working extra hard on our jewelry retail business. It’s surprising how much work goes into running a small online store. My husband, Jared, thinks it’s because only two of us handle all aspects of the business, including…