When my oldest son was diagnosed with severe hemophilia in 1996, I learned that mostly men have the disease. Rarely did I hear of a woman with hemophilia. The terms symptomatic and asymptomatic were used to classify women who were carriers. If the mother of a child with…
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I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman. As I entered the event, I was mesmerized…
A single infusion of AMT-061, an investigational gene therapy for hemophilia B, continues to maintain clinically significant increases in clotting factor IX (FIX) up to six months after its administration, as demonstrated in all three patients enrolled in uniQure…
I’m looking at you, insurance companies and banks who won’t approve people who have a history of chronic illness or who were born with one — such as my husband, who has hemophilia. Of course, I am looking at this from a different perspective than the one businesses take. Then…
A partnership between ARUP Laboratories and Medicover will improve access to AAV5 DetectCDx, the former’s companion diagnostic test to assess hemophilia A patients’ eligibility to Roctavian (valoctocogene roxaparvovec-rvox) in the European Union (EU). The partnership, which allows testing to be done at one of Medicover’s…
It was a sunny, gorgeous day, and I was meeting a friend at one of the most beautiful places in California, where the Klamath River feeds into the Pacific Ocean. River otters and sea lions gather there to feed off salmon. Imagine our luck: The parking lot was open! We…
Bayer announced that six hemophilia clinicians and researchers in the United States were among 16 grant recipients under the company’s Hemophilia Awards Program for 2016. The announcement was part of the World Federation of Hemophilia 2016 World Congress now taking place in Orlando, Florida. Grant amounts for the six were not given,…
Researchers from San Joaquin General Hospital in California reported the case of a 66 year-old man who was successfully treated for acquired hemophilia A and prostate cancer simultaneously.
As a hospice chaplain, I meet people during the hardest moments of their lives. Whether at a deathbed or in a funeral home preparing for a service, these are times of finality. Grief brings people together as they share their loss and honor the person who has died. A recent…