My chronic pain is not caused by a bleeding disorder, but it does give me perspective on the pain my youngest son, Caeleb, endures from hemophilia. Friends stopped by on a recent afternoon to meet our new puppies, and I shared a homemade pie that was fresh from the oven.
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Hemophilia in children is diagnosed at an average age of 9 months, and most children are diagnosed by their second birthday. If your pediatrician suspects your child has hemophilia, you may be concerned about their first appointment with the hematologist. To ease your worries, we’ve put together some tips to help you through…
Bleeding episodes in people with severe hemophilia A receiving prophylactic (preventive) treatment have the potential to impair patients’ health-related quality of life, according to data from a survey conducted in Europe. Even a single bleed was linked to marked medication-related and non-related health costs. In fact, in terms of…
BioMatrix Specialty Pharmacy has announced this year’s winners of its memorial scholarship program, designed to help people with hemophilia and other bleeding disorders pursue higher education. Six scholarships, each worth $1,000 and honoring people who made “unique” contributions to the bleeding disorder community during their life, are awarded…
As a hospice chaplain, I visit patients in homes and long-term care facilities. There is one facility I particularly enjoy visiting because I have a special relationship with the director of nursing. A couple years ago, I was speaking to a nurse about one of my patients when I noticed…
The energy in the room was unmistakable. Before the official start of the Hope Conference in Orlando, Florida, last week, a group of women had been invited for a special preconference event — a day set aside just for us. It was marked by laughter, the sharing of stories,…
In the wake of my mother’s tragic passing in February and the havoc wreaked by Hurricane Ian last year, my living space in Florida has undergone a profound transformation. My mother and I had always depended on a cleaning person to keep our condominium tidy. Those services have been…
The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended Hemlibra’s (emicizumab) approval be expanded to include people with moderate hemophilia A without inhibitors. “We’re very pleased that the CHMP’s recommendation brings us closer to potentially transforming the day-to-day lives of people in the…
When I think back to the early days of raising my first of two sons with hemophilia, I see how I have changed. Back then, I was a scared young woman trying to figure out what the diagnosis of a rare medical condition meant. I found myself living…
Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention. Too often, I fixate on how one decision affected life choices, often leading…