To those caring for a spouse or partner with chronic illness: Maybe you knew about your partner’s condition from the get-go. Or maybe they developed a chronic illness or disability somewhere along the road, and you stuck around, ever the loyal companion. You may feel bound by spousal duties…
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A Letter to Those Who Mean Well
Dear Friend, We live in a world where people want to help each other. I know you mean well, but there are a few things I need you to understand. When I tell you that my son is having a bleed and is in pain, don’t feel sorry for me.
I get many opportunities to travel across the country to speak with families affected by bleeding disorders. Everywhere I go, I see familiar faces — faces that bring me great joy. There are lots of hugs, and each smile warms my heart. My talks change from event to…
This week, we celebrate Balloon Fiesta in Albuquerque, New Mexico. Nearly 600 hot air balloons fly overhead while we stand in the grass, looking up at the beautiful sight. I cannot help but think back to when my youngest son was 8 years old and unable to walk. We…
“MacDonald the Younger” is entering the seventh grade this year. His health is terrific, and for the first time in his life, there is very little fear about participating in physical education. He knows that contact sports are out of the question and he must wear his…
Genentech has launched a program called HemeWork to support the professional development and career goals of people living with hemophilia. HemeWork was developed with input from the Hemophilia Federation of America (HFA) and bleeding disorder advocates across the U.S. to help members of the bleeding disorder community…
Routine blood draws are a necessity when you have an active inhibitor. I try to get Caeleb’s lab work done at least every two months, and the results will give us his Bethesda unit (BU) and half-life status. Having a zero BU is ideal but that alone does…
Hemophilia is a blood disorder that is characterized by a shortage of specific clotting factors that help to form blood clots and stop bleeding. The primary treatment for hemophilia is replacement therapy that supplies the clotting factors to hemophilia patients who lack them. Other approved hemophilia treatments include…
Doctors in Canada are proposing a set of measures to better judge outcomes and the success of programs helping teen-age hemophilia patients transition to adult care, especially for those with more severe disease. They also listed 15 “key elements” of a successful pediatric-to-adult transition program, including eight the doctors saw as feasible…
The first participant has been dosed in a Phase 1/2 dose-confirmation trial that is testing FLT180a, an experimental gene therapy that Freeline is developing to treat hemophilia B. “We are very excited about this progress in our hemophilia B program as our enhanced focus on execution is starting to…