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What car shopping and living with hemophilia have in common
After the flooding from Hurricane Milton totaled my car, I found myself with a whirlwind of emotions and decisions to make. Now, as I embark on the journey of car shopping, I can’t help but notice how much this process mirrors my life with bleeding disorders. Both experiences require patience,…
Glad Wrap wisdom from a mom of 2 hemophilia patients
“Use the Press’n Seal to cover his bandages when showering!” That’s the text I sent to the wife of a hospitalized friend, who was preparing to be released after an arduous stay. Hearing of his plight with doctors, nurses, and a second surgery was reminiscent of past hospitalizations with my…
Hemophilia patients more likely to be infected with SENV: Study
People with hemophilia are more likely to be infected with the SEN virus (SENV), which is associated with blood transfusion hepatitis, or liver inflammation, than healthy people, a study in Iran suggests. The virus was detected in more than half of patients with hemophilia A and most commonly in…
How hemophilia influenced my husband’s need for validation
Living with hemophilia involves more than managing physical symptoms. It comes with mental and emotional challenges, too. My husband, Jared, who has severe hemophilia B and epilepsy, has spent much of his life feeling the need to prove himself. From childhood to adulthood, this drive for validation shaped…
This advocate for hemophilia patients needs a liver transplant
Wayne Cook is someone you can’t help but love from the moment you meet him. His warmth, passion, and dedication to the hemophilia community have made him an irreplaceable figure. He stars in “On the Shoulders of Giants,” a film by a patient engagement agency called Believe Limited that…
Behind the online pictures, there’s the trauma of hemophilia
I signed up for a Facebook account in 2008. Social media was foreign to me then, but I tried it and was excited to find old friends from high school and college. Catching up on one another’s lives was enjoyable, and seeing my friends’ children resembling their parents was fascinating.
Committee recommends approval in EU of concizumab for hemophilia
A European Medicines Agency (EMA) committee has recommended the approval of Novo Nordisk’s concizumab as a prophylactic, or preventive, treatment for adults and children, ages 12 and older, with hemophilia A or B who have inhibitors. The recommendation, from the EMA’s Committee for Medicinal Products for Human Use…
What we’ve learned about obesity, fat-shaming, and hemophilia
Fat-shaming is a widespread issue that can also affect people with hemophilia, especially young children. At its core, fat-shaming involves making negative comments or judgments about a person’s weight, which can lead to feelings of inadequacy or embarrassment. While these remarks may be intended to encourage weight loss or…