Hemophilia patients experienced improvements in joint health, mobility, and overall quality of life after completing a supervised eight-week exercise program, a study reports. However, in order to achieve long-lasting benefits, regular exercise may be required. The study, “Effects of a supervised therapeutic exercise program on musculoskeletal health and…

Last week, just after our wedding, Jared got a shoulder bleed. Jared has severe hemophilia B, but he does not get bleeds often. When he does, it’s almost like a vacation from things, a sign that we need to take things more slowly. When the bleed clots,…

Many times when my sons were younger, I found myself overwhelmed by the constant demands of their bleeding disorder and felt that I had nothing else to give. The needle on my gas gauge was below empty. I felt as if I’d used every ounce of energy and couldn’t…

I’m starting to recover from my recent iliopsoas bleed. I’m irritated that my right hip isn’t as flexible as it used to be, but that’s a normal part of recovery. It’ll take me a while to regain the ability to move freely and easily. I’m looking forward to the…

Last week, as I was leaving the Coalition for Hemophilia B’s annual symposium in Dallas, I found myself in an Uber headed to the airport. Usually, I wouldn’t discuss my bleeding disorders — hemophilia B and von Willebrand disease — with strangers, but a chance encounter…

I have celebrated Mother’s Day, as a mom, for 24 years. In those years I’ve experienced tremendous joy and insurmountable grief. Some of my deepest grief came right after both of my sons were born. Instead of a time filled with happiness, a cloud of despair loomed as they were…

I am a pregnant entrepreneur. Throw in a husband with hemophilia and epilepsy into the mix, and there you have it: the crazy life I’ve been living for the past five months. Let’s do away with the inspirational mumbo-jumbo that goes, “Everything will be OK, just have faith!” Instead, let’s…

Eloctate can induce immune tolerance in people with hemophilia A more quickly than other regimens, a study suggests. The study, “Real‐world data of immune tolerance induction using recombinant factor VIII Fc fusion protein in patients with severe haemophilia A with inhibitors at high risk for…

Plan D. That’s what I’m working on now. Last week, I learned that a factor VIII (FVIII) product I’m taking for my hemophilia has had some disappointing results. I can’t say I’m surprised about that, as I had a negative reaction to the medication, including feeling lightheaded and…