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…
Search results for:
Interim results from the Phase 3 ASPIRE study indicate that patients with hemophilia A showed continuous improvement in joint health for nearly three years while receiving prophylactic dosing of Bioverativ and Sobi’s Eloctate. The interim results were reported in a study titled, “Improved joint health in subjects with severe haemophilia A…
Irony manifests in diverse forms, but cosmic irony captivates me the most. This literary device suggests that the universe possesses a sense of humor, purposefully orchestrating situations contrary to expected outcomes. This often results in both amusement and reflection. One popular example of cosmic irony happens in the movie…
AlphaNine SD (human coagulation factor IX) is a highly purified, plasma-derived clotting factor IX (FIX) concentrate that's approved to prevent and control bleeding in people with hemophilia B.
A number of clinical studies have reported that bone marrow-derived cells contribute to the production of clotting factor VIII (FVIII), the molecule linked to hemophilia A. Because the current treatment for this bleeding disorder is associated with some disadvantages and risk, hematopoietic stem cell transplant (HSCT) has become an emerging therapy approach…
I’ve always had a hard time coping with the fact that it’s quite difficult for me to find a decent source of income due to hemophilia and epilepsy. Although government and private institutions say that they are inclusive of persons with disabilities (PwDs), the reality is that discriminations against…
Gene constructs making up Roctavian, an investigational gene therapy for hemophilia A, did not permanently integrate into the genome of non-human primates or cause any signs of tumors or malignancy in the animals. These are…
Hemophilia has required me to make some major adaptations in my life. One of the biggest came when I was younger and needed to start infusing medication on my own. At first, doubt and fear crept in. Can I really do this? Is it going to hurt? But…
Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…