“L’hitraot” is a word I learned while living in Israel. It is a gentle way to say goodbye, essentially meaning “see you later.” I am transitioning to a new job at a nonprofit organization, and this will be my last column here at Hemophilia News Today. It has been an…
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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…
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.
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…
The U.S. Food and Drug Administration (FDA) recently granted orphan drug status to rofecoxib (TRM-201), an non-opioid investigational pain treatment for hemophilic arthropathy (HA, a hemophilia degenerative joint disease) under development by Tremeau Pharmaceuticals. Rofecoxib is a COX-2 selective non-steroidal anti-inflammatory drug (NSAID) with a well-established efficacy profile. It is…
I first attended a Bleeding Disorders Conference in October 1998. The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) offered the event during Halloween week in New Orleans. My wife, Cazandra; my oldest son, Julian; and my mother, Ruby, entered our hotel with me, not sure…
When I was diagnosed with hemophilia B and von Willebrand disease in the 1970s, I was just 10 years old. Back then, most people didn’t believe girls could have hemophilia. I was told that my “deep blood” didn’t clot properly and sent on my way. Bleeding…