A “6 Years Ago Today” moment popped up in my Facebook feed recently. The notification took me back to another Thanksgiving when my son, Caeleb, was 7, and we were in the hospital. He had port access issues, his factor levels were all over the place, and a knee bleed…
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Dreams of a Better Future
My husband, Jared, and I are at a point in our lives where our careers have taken on greater significance. It seems like just yesterday when we were college students eager to graduate and experience life, curious about the mysteries that the future might hold. We were figuring out our…
I recall an early experience with anxiety. I was standing at the back of the church, ready to appear before the congregation to offer the sacrament of communion. But something held me back. The more I fought my feelings, the more I struggled. I took labored breaths as I stood…
With so many injuries lately, possibly because of a lack of exercise, I found it necessary to finally learn the ropes of self-infusion. Self-infusion of critical factor is important for me to prevent and treat bleeding episodes. As much as I have wanted to learn the craft, I…
The importance of keeping a consistent schedule cannot be understated. A solid daily routine can help you save time, be more effective, and reach goals faster. As a new mom and wife to a person with hemophilia, scheduling does not come easily. Most of the time, my schedule is…
The Analysis Group has partnered with China’s Institute of Hematology & Blood Diseases Hospital (IHBDH) to create the first blood disease research platform in that country. The new platform, called the National Longitudinal Cohort of Hematological Diseases in China (NICHE), will store clinical data on more than 10,000 people…
You don’t have to look far to find people who are afraid of needles. There is something to be said about sharp, pointy things digging into your flesh. The process is not fun, and we endure it knowing that the medicine will fulfill its purpose. We hope to feel better…
Many in my millennial generation dread adulting. The idea of surviving in the real world without the comfort of a family safety net is daunting. Young adults who are barely scraping by can feel alone and isolated. I was thrust into the world of adulting fairly early. In our mid-20s,…
People with bleeding disorders face a variety of challenges. Healthcare access is a constant concern and covers myriad issues, including political and financial stability and regulatory and provider awareness. Most of us spend a fair amount of time educating and advocating for these issues. One thing we don’t often talk…
We Never Stop Learning
I often say that I wish there were a course titled “How to Be a Good Parent.” You would graduate with a diploma and the confidence that your book smarts would translate into perfect child-rearing. Nothing would hold you back. Unfortunately, that’s not real life. There might be training opportunities,…