My husband, Jared, gets a lot of bruises. Not because he gets into brawls a lot, and most certainly not because we fight (although we like to troll people with these possibilities just for fun — dark humor, we know). His quick bruising is because he has severe…
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In rare instances, people with hemophilia can grow bones outside their skeletal tissue — with bone growth found in muscles and soft tissues — which significantly limit their range of motion, according to a recent case report. Surgery can improve the functional outcomes of patients with this abnormal bone…
The hemophilia landscape is much different today from 21 years ago, when my first son was born. There were not many choices in products and they all seemed to do the same thing — help with clotting when the body needed it. Over these years, we even went…
I’ve been reading quite a bit of philosophy in my free time lately. Right now I’m reading the works of Seneca, a first-century Stoic philosopher. I’ve always been interested in Stoic philosophy and its teachings. As a field of study, Stoicism is concerned mainly with how humans can attain…
Cazandra Campos-MacDonald, a parent of two sons with severe hemophilia, reflects on preparing early for the transition to adult care, the challenges of letting go, and the growth that comes with independence. Read her column here.
Treatment with marstacimab (PF-06741086), an experimental antibody-based therapy developed by Pfizer, reduced the number of bleeds in patients with severe hemophilia who took part in a Phase 1b/2 clinical study. This held true regardless of whether patients had hemophilia A or hemophilia B, or had inhibitors…
GenScript ProBio and Neoletix Biotechnology have entered into an agreement for clinical and commercial production of a lab-made version of coagulation factor VIII, a product that the companies hope will make the preventive treatment for hemophilia A more accessible to patients in China. Coagulation factor VIII, or FVIII,…
My wife and I met families with ties to the bleeding disorders community through our hemophilia treatment center (HTC). One day, Rita, the former chairwoman of our local National Hemophilia Foundation chapter, asked us to join the board of directors. I agreed, because who can say no to…
As someone who typically sees the glass half full, I’ve found myself to be the go-to adviser for my nephews, especially when they’re having a full-blown panic attack, which unfortunately seem to be increasingly common among young people, at least in my family. Whether they’re venting about their jobs or…
In the early days of a diagnosis, emotions run wild. Anxiety, helplessness, and anger are a few feelings that cloud the mind, and it’s difficult to even begin to understand what lies ahead. In 1996, my first son, Julian, was born and diagnosed with severe hemophilia A. In…