I sit waiting for my youngest son to complete an MRI of his right ankle. He has been overwhelmed with pain from constant breakthrough bleeding episodes. For a while, recombinant factor VIII was working to treat his hemophilia and we were euphoric, but we soon learned that internal…
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The holiday season is upon us. Often, we have our meal around a table with people we love, and we give thanks for one another’s company. The holidays are all about rituals — preparing feasts, gathering to exchange gifts, and focusing on the things that unite us. Year after…
I recently helped a colleague with an exhibit at a fall festival. The venue was an assisted living facility, and we provided games and treats for the residents and children in the community. Our inflatable blue pool with colorful plastic fish made for a fun fishing expedition for all…
Doctors discovered a rare combination of blood clotting disorders — acquired hemophilia A alongside an inherited disorder called Factor XII deficiency — in a 70-year-old man set to undergo a leg amputation due to foot gangrene. “This case highlights the importance of considering acquired hemophilia A in unexplained bleeding…
Octapharma USA Sponsors Retreat for Women With Bleeding Disorders and Screens ‘Bombardier Blood’
There are still too many women with bleeding disorders who, despite symptoms, are unaware of their disease. That circumstance will be a major topic Oct. 19-21 at The Fourth Annual Female Factor Retreat, hosted by the Hemophilia Foundation of Northern California (HFNC). Other topics at the educational retreat, to…
Last week, I wrote about the bond I formed immediately with my oldest son, Julian. Caeleb, my youngest son, recently reminded me of the unique bond he and I share. Toward the end of her third trimester, my wife, Cazandra, started to experience complications, so her medical team admitted…
Intracranial Hemorrhage Risk: When to See the Doctor
One of the greatest risks to people living with hemophilia is a bleed in the brain (or intracranial hemorrhage). Around 3 percent of people with moderate or severe forms of the disease will experience an intracranial hemorrhage — some will be a result of a head injury, others may experience…
It’s infusion day again! Pens, inks, and assorted notebooks leave our bedroom work desk to make room for a makeshift medical setup. Medicine vials, alcohol swabs, and needles take their place. For my husband, Jared, who lives with severe hemophilia B, this is more or less a monthly routine.
Most people with severe hemophilia A who were given once-weekly treatment with efanesoctocog alfa in the Phase 3 XTEND-1 trial were bleed-free over a year on treatment. The therapy also improved joint and overall physical health and eased pain intensity in the participants compared with previous treatments. Results…
Parents of children with hemophilia in the U.K. are generally aware of gene therapy, but many lack both the knowledge necessary for an informed decision and confidence regarding this form of treatment, according to a questionnaire and interview-based study. Most of those interviewed were unaware that gene therapies are…