Showing 2831 results for "hemophilia"

It’s OK to Advocate for Care

I attended my first women-only hemophilia retreat in the fall of 2016. To say the weekend was an eye-opener would be a gross understatement. It changed my life. First of all, I learned that I was not alone in my struggles to understand lifelong bleeding…

On the Road with Ross: Driving in the Winter

Lately, I’ve spent a lot of time driving on Interstate 95. I barely like driving across town, let alone spending eight or more hours a week on one of the most congested stretches of highway in America. But I’ve joined the legion of long-distance commuters on the East Coast. Several…

The Importance of Self-care

A lack of control is one of the most frustrating things about staying in the hospital. Doctors, nurses, and everyone else enters the room without permission. Nothing runs on my schedule. I need to find a way to reclaim at least a small part of my life. I do not…

The Stories We Don’t Hear

It was a beautiful Sunday afternoon and I encouraged my son Caeleb to take our dog, Betty, for a walk. He gathered the necessities of a 14-year-old — headphones and music — and put Betty on her leash and off they went. Encouraging my son to be active is difficult.

Take Care of Yourselves, Carrier Moms!

Carrier moms — those whose sons or daughters have hemophilia — inspire me. I see you struggle, sometimes daily, with the realities of parenting a child who has a chronic condition. Your tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and…