I recently received an intriguing piece of jewelry in the mail. It’s a prototype of a design I hope to sell someday. But I loved it so much that I wanted one for myself. The design is rather goth-themed, featuring a coffin-cut black onyx gem in the center flanked…

In a reversal of a previous recommendation, the U.K.’s National Institute for Health and Care Excellence (NICE) has recommended that the National Health Service (NHS), England’s publicly funded health insurance program, should offer reimbursement for Hemgenix (etranacogene dezaparvovec) to eligible adults with hemophilia B. Reimbursement would come through…

When my sons with hemophilia were children, my role as their advocate seemed clearly defined. My wife, Cazandra, and I sought as many sources as possible to make the best decisions for their welfare, consulting leading specialists to help us when complications arose and spontaneous bleeding…

The past two weeks have been a whirlwind of activity for me, highlighted by two significant events. First, I attended an event in Washington, D.C., called “Voices of Hemophilia,” which was sponsored by the biotech company CSL Behring. This small but powerful gathering brought together eight leading voices from…

Most caregivers or patients with hemophilia who were on preventive treatment were satisfied or very satisfied with the Florio Haemo smartphone app, even after prolonged use, a survey study suggests. The app lets patients track their infusions, bleeds, pain, and activities, and helps them manage their medication stock.

For years, long periods in the hospital proved challenging for my family. My youngest son, Caeleb, required many extended stays because of breakthrough bleeding episodes related to hemophilia. We often tried to find ways to break the monotony of the sounds of medical machinery that frequently rang and…

Saying no has always been a challenge for me. I tend to overcommit, take on too many tasks, and then feel resentful toward the people or activities I didn’t want to engage with in the first place. For instance, I’m now on my condo board because I couldn’t say no…

My youngest son, Caeleb, and I recently visited the Ted R. Montoya Hemophilia Treatment Center (HTC) for his yearly checkup. This appointment was his first to the treatment center since turning the magic age of 18. Before leaving the house, we discussed what he should expect as a newly…

Lately I’ve been pondering how to achieve long-term happiness and fulfillment while managing finances and chronic illnesses. My husband, Jared, battles hemophilia B and seizures while I manage attention-deficit/hyperactivity disorder and bipolar II disorder. Receiving Jared’s medication through humanitarian aid is a blessing, yet its consistency isn’t…

I’m sitting at my desk at work, focusing on projects I must accomplish before the day ends, when suddenly my ringtone fills the room with the song “Defying Gravity” from the Broadway musical “Wicked.” I see that my oldest son, Julian, is calling me. I smile when I…