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Coping and Staying Connected During COVID-19 Quarantine

As of this writing, my family and I have been in quarantine for over a week because my husband, Jared, has COVID-19. We were anxious after he tested positive,  because we didn’t know what the outcome would be. Thankfully, he’s doing much better, and his symptoms have subsided. He…

How to Recognize and Respond to Medical Trauma

There are multiple types of medical trauma. A medical emergency can be traumatic. Chronic medical issues can be traumatic. Struggling to obtain a diagnosis and treatment is traumatic. I believe that one of the most consequential results of suffering medical trauma is the subsequent refusal to engage with medical professionals.

Teaching My Son to Take Responsibility for His Life

Over the past few years, my youngest son has developed pain in joints that were damaged by internal bleeding episodes. As a result, he struggles some days to walk due to an arthritis-like ache. His hematologist prescribed the medicine Celebrex (celecoxib) to help with inflammation, which decreases…

MarzAA Reduced Bleed Frequency in Certain Male Patients

Preventive treatment with marzeptacog alfa activated (MarzAA) can reduce bleed frequency substantially in men with hemophilia A or B who developed inhibitors to conventional replacement therapies, according to data from a Phase 2 clinical trial. The findings were reported in the study, “Subcutaneous engineered factor…

HFA Tackles Mental Health ‘Head-on’ With New Well-being Courses

The Hemophilia Federation of America (HFA) is now offering mental health and well-being courses, through its Learning Central program, to support people with hemophilia, as well as their caregivers. Topic areas include anxiety, suicide, trauma, pain management, depression, and grief. Offered resources in the program’s library can be…

New Guidelines Issued to Self-administer Hemlibra

The National Hemophilia Foundation (NHF), through its Nursing Working Group (NWG), has released new guidelines to help hemophilia A patients self-administer Hemlibra (emicizumab). In its announcement, the foundation also highlighted the issuance of new guidelines for nurses to ensure safe and effective administration of standard into-the-vein…