Unexpectedly high demand for the 3,000 international units (IU) vial size of Rebinyn (nonacog beta pegol) has resulted in a temporary shortage of the Novo Nordisk factor IX (FIX) replacement therapy for those with hemophilia B, according to the company. In a statement, Novo Nordisk said…
On a recent call with others in the bleeding disorders community, a poignant concern emerged: the fear that the harrowing history of hemophilia‘s dark days may be slipping from our collective memory. The “hemophilia holocaust” remains a haunting chapter in medical history, etching an indelible mark on…
Today started out like most any other day. I walked into the room of my youngest son, Caeleb, to wake him up to get ready for school. I love the ritual of turning on the lights and singing a familiar tune to my family. As I began, however, I found…
Progressive joint disease caused by repeat bleeds, a condition known as hemophilic arthropathy, affects people with moderate hemophilia in Nordic countries regardless of age, commonly causing them pain and restricting their mobility, a study found. Middle-age patients, those 41 to 50 years old, felt their overall quality of life…
PEGylation is one of the molecular technologies that has been used to create extended half-life replacement therapies for hemophilia. These longer-lasting therapies don’t need to be administered as often, reducing the treatment burden for patients.
As my beloved hematologist pointed out during my last hemophilia clinic appointment, my health situation is rare. I have at least two identified bleeding disorders: von Willebrand disease and hemophilia B. I’ve met others along my journey who have two disorders, too, but the situation…
I have battled weight and self-image issues since I was a teenager. Being present with my hospice patients day in and day out becomes draining. I take on any pain and disappointment my husband and sons experience. And when I witness my boys struggle because of hemophilia, the…
Cyklokapron (tranexamic acid) is an approved hemophilia medication that's designed to control or prevent bleeding episodes in patients, and reduce the need for replacement therapy during and following a tooth extraction.
As the season of love and romance approaches, my husband, Jared, and I are already brainstorming ideas for possible February dates. We’re no strangers to unconventional coupledom. A trip to a park or a museum trumps a stroll at the mall; a night filled with laughter while watching a comedy…
Hemgenix (etranacogene dezaparvovec), the first and only one-time gene therapy approved for hemophilia B, has been approved in Switzerland, CSL Behring, the company marketing the therapy globally, announced. “The approval of Hemgenix in Switzerland marks an important milestone for patients, and we look forward to collaborating with…
Get regular updates to your inbox.
