Novo Nordisk has issued a notice warning healthcare professionals that the hemophilia B treatment Rebinyn (nonacog beta pegol, or N9-GP) can interfere with some laboratory tests that measure blood coagulation. Following reports that people with severe COVID-19 may develop a blood-clotting condition similar to…

Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. They say hindsight is 20/20, but I never really understood what that meant until I became an adult. Sometimes, I think back to my…

When I was a young girl, I sat next to my father while he self-infused. I handed him his supplies — butterfly needles, syringes, alcohol, cotton, and medical tape — as he needed them. I watched every step. The factor was mixed, then drawn into…

I celebrated Mother’s Day a week ago at home with my family. We held a sale at our Instagram shop for the family jewelry business and sold several Mother’s Day goodies. It was a relief that this sale was successful. Having enough resources for our family is enough of a…

I have celebrated Mother’s Day, as a mom, for 24 years. In those years I’ve experienced tremendous joy and insurmountable grief. Some of my deepest grief came right after both of my sons were born. Instead of a time filled with happiness, a cloud of despair loomed as they were…

Spoiler alert: This column shares brief plot details from the Netflix series “Atypical.” Caregiver fatigue is real. It’s normal, and people should talk about it. Lately, my husband and I have been watching the Netflix series “Atypical,” which focuses on the life of an autistic teenager,…

I first noticed the survey as I headed down the street while the sun was rising last Sunday morning. A rock painted bright orange with the words “poll of the day” anchored a sheet protector. Inside, a green index card asked: “Would you rather have a lifetime subscription to Netflix…

Families who live with chronic illness have quickly learned to place trust in medical teams to determine the best course of action. If doctors and nurses suggest we quarantine, we may not like it, but we follow the guidelines, believing that the prescribed course of action will deliver the…

I used to be great about determining if my now 14-year-old son Caeleb was having a bleed. Identifying the symptoms of a joint bleed was second nature to me. Swelling of the joint, warmth to the touch, redness in the area, and pain are a few of the telltale signs…

Europeans with severe hemophilia are largely satisfied with available treatments and able to maintain active lives, according to a survey of healthcare professionals by the biopharmaceutical company Sobi. Results also showed that 23 countries across Africa, South America, and Asia rely entirely on the World Federation of Hemophilia…