Almost 27 years ago, I received the title of caregiver when my first son, Julian, was born. Not realizing that my role in his life would change over the years with his hemophilia, I gladly performed my duty and helped him navigate the waters of medical care. Ten…

My husband, Jared, and I have been binge-watching “House” lately. Watching this mid-2000s medical drama as a couple living with chronic and mental illness is a fascinating experience, since we’re no strangers to hospitals and medical procedures. One of the episodes we found compelling featured a…

Navigating social media for information about hemophilia and other health issues can produce mixed results, but amid the noise are shining beacons of knowledge and support. In honor of Bleeding Disorders Awareness Month, which is now coming to an end, the following are five exceptional social media accounts…

I’ve always had a naturally good “firefighter mode.” As a child, I was inventive and resourceful. If I accidentally left my homework at home, I could do it over in minutes. In high school, I was the go-to person for completing group projects under pressure. This pattern continued well into…

In observance of Bleeding Disorders Awareness Month, the integrated infusion therapy provider BioTek reMEDys is calling attention to the importance of safe treatment use and education among people with conditions such as hemophilia and von Willebrand disease. Each March, the bleeding disorders community and supporters seek to heighten…

Note: This column describes the author’s own experiences with Mounjaro (tirzepatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In a previous column, I shared my journey of embarking on a weight loss program using the type…

It’s infusion day again! Pens, inks, and assorted notebooks leave our bedroom work desk to make room for a makeshift medical setup. Medicine vials, alcohol swabs, and needles take their place. For my husband, Jared, who lives with severe hemophilia B, this is more or less a monthly routine.

Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for…

As I sit at my computer, fatigue seeps into my bones. The intense heat here in the Philippines, combined with the side effects of my new acid reflux medication, amplifies my exhaustion. Mild tension headaches make looking at bright screens unbearable, rendering work nearly impossible. My body’s clear message is:…

Switching to Jivi (damoctocog alfa pegol), an extended half-life replacement therapy, from Kovaltry (octocog alfa), may help adults and children with severe hemophilia A experience fewer or no bleeds, according to a Canadian study. “Data from this study provide routine clinical evidence supporting the use of [Jivi]…