I look into my son’s eyes and see beauty. I see the vibrant green, which fades into a blue that rivals the sky. Down in the lower left part is a spot of brown that never changes. His eyes give us a reflection of his soul. Though change is all…

When my youngest son, Caeleb, was 5 years old, he participated in our church’s yearly Easter egg hunt. We divided the children into younger and older categories to help even the playing field. The smaller church members started first, gathering as many eggs as they could find. After the little…

We all enter history at a different point; our entry into the timeline of the world marks where the future of us begins as individuals and families. Sometimes, we accelerate into the on-ramp that launches us, and sometimes we bumpily move toward our mark. On our first date, my now-husband…

The first Blood Advocacy Week, which promotes activities to showcase the importance of maintaining a safe and continuous blood supply and advocate for changes in policies that strengthen blood supply chains in the U.S., will take place April 24–28. Hemorrhage, or bleeding, is the leading cause of preventable death…

We are in the middle of January and some of the resolutions we promised to keep just a couple of weeks ago already seem to be fading away. Our intentions were wonderful and our commitment admirable. So what happened to our fortitude? Did something act as a roadblock…

Heroes come in all shapes and sizes. Sometimes, it is challenging to recognize the people in our lives who overcame overwhelming odds to remind us that life means more than merely accepting our condition. We must thrive, even when we face uncertain futures, painful treatments, or life-changing issues. Our champions,…

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

Note: This column describes the author’s own experiences with factor replacement therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It is 10:30 a.m. and I am having my blood drawn. I am doing a trough level test, which…

Lately I’ve been feeling stuck. My life seems to have taken on the appearance of an infinite to-do list. The moment I tick off a box, three more appear. Every day, I am literally out of breath running errand after errand, with the ultimate goal of somehow staying afloat. Bills…

“It’s nothing.” That phrase is often associated with women. Many have argued that women tend to obscure their feelings to avoid hurting other people, especially their partners. As a woman and a wife, I question this generalization, mostly because my husband says the phrase more than I do.