The first documented case of a previously untreated hemophilia B patient developing inhibitors against the extended half-life therapy Alprolix was described in a report from Canada. The report also shows how combining routine administration of Alprolix with medications that suppress the immune system can be used to stop…
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Acupuncture was found to be more effective for reducing chronic joint pain in hemophilia patients than transcutaneous electrical nerve stimulation, or TENS, the results from a small clinical trial show. “Any treatment that can decrease chronic pain should be considered and acupuncture may have something to offer,”…
Prophylaxis is commonly referred to as a preventive measure in hemophilia of regularly infusing blood clotting factor concentrates to avoid bleeding. This approach stemmed from research that patients with mild-to-moderate hemophilia (or those who have clotting factor levels of 1 percent or more) rarely experience spontaneous bleeds and have less joint damage…
Saying no has always been a challenge for me. I tend to overcommit, take on too many tasks, and then feel resentful toward the people or activities I didn’t want to engage with in the first place. For instance, I’m now on my condo board because I couldn’t say no…
At this time of the year, I like to clean. Not just dusting and mopping, but also purging my home of unnecessary items. Unworn clothes, worn-out shoes, and overwhelming stacks of papers and magazines. The other important area that needs a thorough inventory is my home medical supply…
When it comes to home maintenance and improvement, there are several types of people. Some look the other way when their home needs upgrades due to a lack of time, money, energy, or interest. Others coordinate with repair people who come in and do the necessary work. Do-it-yourself people look…
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Advocating in Changing Times
When you live with a bleeding disorder, there are many things that are out of your control. When the next bleed will happen, how long a hospital stay will last, what the results of the blood work will tell you, and how much you will pay per unit…
The European Medicines Agency (EMA) has accepted BioMarin Pharmaceutical’s request for accelerated assessment of Roctavian, the company’s investigational gene therapy for severe hemophilia A, for a second time. Last year, BioMarin’s regulatory applications for Roctavian (valoctocogene roxaparvovec) got rejected both in Europe and in the…
The start of a new school year is one of my favorite times. It smells of new pencils and crayons, lunchboxes, and my favorite, spiral notebooks. It’s a season of new beginnings, and when you have a child with hemophilia, you need the adults who will be teaching them…
Having a bleeding disorder can be frightening. In the beginning, it is normal to think about the what-ifs when you’re unsure of what to expect. “What if I don’t know the signs and symptoms of a bleed? What if I never learn how to infuse my child? What…