Three patients who received SPK-8011 — a gene therapy developed by Spark Therapeutics — for hemophilia A show increased production of clotting factor VIII without any safety issues reported, says the company. The patients are the first to receive the treatment as part of a Phase 1/2 clinical trial, with…
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Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.” Me: “Oh no, that doesn’t sound good. Can you tell me what’s going on?” Medical assistant: “We just got your baseline bone density tests back and they show you…
The Korean Ministry of Food and Drug Safety has agreed to Catalyst Biosciences’ request to add a sixth group to a Phase 1/2 clinical trial of its hemophilia B treatment. The sixth group in the trial (NCT03186677) of the therapy that Catalyst calls CB 2679d (ISU304) will include up…
Living with hemophilia is challenging for anyone. It can be even more difficult for women who struggle to obtain a diagnosis and treatment. Despite the struggles, I am thankful for many things. A missed diagnosis I am thankful that the hospital lab made an…
Researchers at the Centre Hospitalier Metropole Savoie in France identified a rare case of associated myelofibrosis (MF) and acquired hemophilia A (AHA), which they believe to be only the second case reported to date. The study, “Myelofibrosis and acquired hemophilia A: a case report,” was published in the…
Patients with hemophilia B are reporting a mostly positive response to treatment with Ixinity (recombinant coagulation factor IX), according to new data from Aptevo Therapeutics, the therapy’s maker. The company presented the patient-reported outcomes data at the recent Thrombosis and Hemostasis 2018 Summit of North America in San Diego. The event is…
In January 2017, I lost my mother, who had fought cancer for several years. I fell into a deep depression, and then suddenly found out I was pregnant. The new life inside of me helped me slightly overcome the depression. I started taking better care of myself and researching…
The power of music cannot be underestimated. Its universality has the ability to connect people across places and cultures. Many people also find music healing. They can find solace in lyrics and melodies that evoke pleasant emotions or that mirror their emotional states. Why does this happen? Music activates particular…
Sometimes I feel like I don’t belong. I’m a misfit, an imposter. I feel fine and haven’t had a bleed in almost a month. Do I really have hemophilia? Do I really need to infuse every three…