There have been seasons when hemophilia became the center of my family’s universe. A bleed would start and before it healed completely, it re-bled, or a new one began. Visits to the clinic for appointments, timed blood draws, unpacking factor and supplies, phone calls about co-pay assistance, factor…
Search results for:
Equipping yourself with knowledge is crucial for advocating for your hemophilia B healthcare, especially if you want to ask your doctor about trying a new treatment like gene therapy.
There are moments in our lives that are seared into our memories. Some of those in my life include getting married, giving birth, starting a new job, and bringing my now-husband to meet my family. One vivid memory is when my obstetrician told me that I would soon know more…
When our youngest son, whom we affectionately call “MacDonald the Younger,” was diagnosed with hemophilia, my wife and I didn’t know how to respond. We were in a state of shock and hadn’t thought something like this was possible. Later, we learned that my wife was a hemophilia carrier,…
The National Hemophilia Foundation (NHF) has received a $500,000 grant from the Centers for Disease Control and Prevention (CDC) to support education and outreach efforts in bleeding disorders. The five-year funding will help the NHF conduct programs for patients and healthcare providers related to inhibitor awareness, treatment for…
Second in a series. Read part one. Both of my sons were diagnosed with severe hemophilia A a few days after they were born. But that’s where their similarities end. As I shared last week, things went smoothly after we switched to a more flexible way of caring…
Good mental health is crucial for caregivers of people with chronic illnesses. As a wife to someone with severe hemophilia B and epilepsy, I’ve seen firsthand how mental health matters to both patient and caregiver. I have to balance my husband’s needs with my own physical and…
I love a good routine because they’re predictable and comforting. As someone who is anything but a morning person, I find my morning routine to be the most essential. I’m not particularly fond of breakfast, so as part of my routine, I make myself a smoothie that I usually finish…
Columns
Frogs, Snails, and a New Chapter
We are in a new town. A fresh start. My mighty warrior already loves the landscape that allows him to catch frogs and snails and marvel at the rain. When we lived in the desert, the eyes of our little boy didn’t see these things as easily. While…
First in a series. When our sons were babies, my wife and I depended on our home-care company to infuse them with a clotting agent to combat the internal bleeding caused by their hemophilia. Infusions require a steady hand to hold the needle, insert it into a…