Sobi and Sanofi announced an additional donation of up to 500 million international units (IUs) of clotting factor therapy in support of the World Federation of Hemophilia‘s Humanitarian Aid Program. The clotting factor goes toward treating people with hemophilia in developing countries where access to medicine is…
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Managing Chaos as a Family
If there is one word in the English language that drives me batty, it’s “chaos.” It implies a lack of control and an inability to stand on firm ground. It isn’t pleasant to be forced into a world that lacks any sense of stability. I must find a way to…
Valoctocogene roxaparvovec, BioMarin Pharmaceutical‘s investigational gene therapy, results in a more than 90% drop in annual bleeding rates and the use of clotting factor VIII (FVIII) in men with severe hemophilia A, updated data from a Phase 1/2 clinical trial show. It also precluded the need for…
My son Caeleb is 14 and entering high school this fall. He is at an age in which I, as a parent, do not speak on his behalf in front of him. He is old enough to share his story about his hemophilia diagnosis when he deems it appropriate. I…
Not all medical visits are created equal. Sadly, or perhaps horrifyingly, some women must fight to get access to the most basic of care, while others are fortunate enough to access it easily. While this is reality, it is not OK. It is imperative for the health of…
Life is awful from time to time. As someone with mental illness who is married to a person with hemophilia and epilepsy, I am no stranger to that thought. Various things can trigger me to ruminate on the thought that life is fickle and occasionally sadistic. It could be…
Answering the Tough Questions
As caregivers of loved ones managing chronic illness, we face questions that, when first heard, knock us to our knees. For my family, it was not so much a question as a statement. When “MacDonald the Older” was 4 years old, we set up to infuse through his port-a-cath…
Sometimes being different is a good thing. You display your unique characteristics and qualities to the world through your clothing, hair, and makeup. Your actions reveal your views on social justice, and you voice your political views because your beliefs are a key part of who you are. Sometimes, others…
My husband, Jared, and I both share an interest in psychology and human relationships. We often bond over discussions about mental health and the way human beings interact. As a couple affected by hemophilia and mental health issues, we find such conversations therapeutic as we are able to share our…
Despite the COVID-19 pandemic, Catalyst Biosciences has successfully completed a Phase 1 trial of marzeptacog alfa activated (MarzAA), with results supporting the treatment as an on-demand option for bleeding episodes in people with hemophilia A or B. The study, MAA-102 (NCT04072237), was designed to assess…