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The challenges and triumphs of factor self-infusion

My husband, Jared, has been performing his factor infusions for his hemophilia B for over three years now. In that span of time, he’s learned so much — not just about veins, syringes, and technique, but also about his body and his limits. Infusing factor IX has become…

More preventive treatment options needed, researchers say

Prophylactic (preventive) treatment for hemophilia A and B is generally more effective than on-demand treatment in reducing the frequency of bleeding, but the benefit is not as clear in patients who have developed inhibitors that limit how well replacement clotting factors work. That’s according to real-world data from…

Times when we can be parents and not caregivers

Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately. For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we…

Caregiving is a lifelong learning process

Lately, I’ve been thinking about what it means to be an expert. In my work as a virtual marketer and strategist, the word gets used all the time. People in my profession are expected to act like we know exactly what we’re doing. We’re told to speak with…