Life in the hospital can overwhelm us and leave us beaten down, as if we fought a war to end all wars. We exist by preparing for the next nurse, technician, or doctor to enter the room to check on our loved one. In our case, “MacDonald the Younger” suffered…

I have never heard anyone say, “I wish I could relive middle school.” It is a time when bodies rage with hormones and kids are gangly and awkward with acne and questions. It is also a time when grace is not extended to others. Kids can be mean.

The National Hemophilia Foundation (NHF) is inviting the country’s bleeding disorder community and others to participate in a first virtual Unite for Bleeding Disorders Walk on Oct. 10. The walk provides a means to raise funds for and awareness of disorders such as hemophilia. Due to the…

Feeling hopeless? Wondering how you will possibly find the energy to go on? Wanting to smash your alarm clock, pull your covers over your head, and hide in your bed all day long? You are not alone. Coping with hemophilia day in and day out, as a patient or a…

As I write this, it’s the end of the month again, that time when bills are due, debts rack up, and stress is high. I often can’t help but fantasize about what life might be like if I were more successful as an entrepreneur. In the business world, success is…

A recall on Ferring Pharmaceuticals‘ intranasal desmopressin compounds — used to treat mild to moderate hemophilia A and von Willebrand disease type 1 — is expected to affect the availability of these products until at least mid- to late-2021, according to an advisory from the…

Using prednisone in combination therapies increases an infection risk but also better raises the likelihood of patients with acquired hemophilia A (AHA) achieving complete remission than does prednisone given alone, a Dutch study found. The retrospective study, which evaluated patients diagnosed over a 27-year period, also found that…

Note: This story was updated Nov. 6, 2020, to clarify key scientific concepts. The gene-editing tool CRISPR/Cas9 enables a targeted gene insertion approach that may be superior to conventional gene therapy at restoring the activity of factor IX (FIX), the blood-clotting protein missing in people with…

The current state of our world has me longing for something. It’s something that when gone, nothing remains quite the same. What I long for is routine. Yes, I miss the humdrum and the mundaneness of routine. I can still count on some aspects of my life remaining steady, such…

Earlier today, as I was browsing one of the Facebook mom groups I belong to, I came across another mother’s heartbreaking post. Her daughter, a toddler like my own girl, had been battling cancer for some time. All I could think was that she was too little to have to…