My oldest son, Julian, caught me completely off guard recently. “Dad,” he said when I answered his call. “When the hematologist and her medical team entered the hospital room to tell you and Mom that I had hemophilia, what did you need for them to say to help you…
Discussion
Hemophilia has required me to make some major adaptations in my life. One of the biggest came when I was younger and needed to start infusing medication on my own. At first, doubt and fear crept in. Can I really do this? Is it going to hurt? But…
Discussion
Every week, I lead the pastoral prayer at church. It’s a moment to share what brings us joy and what weighs on our hearts as a congregation and a community. I always pray for the unhoused, the hungry, the grieving, and our country. But there’s one group I often mention…
Discussion
I have been applying to graduate programs that would incorporate more spirituality into my advocacy work with the hemophilia community and allow me to explore how faith and spirituality help people cope with bleeding disorders. Among them was a dream doctoral program for working professionals that offered students scholarships…
People with hemophilia who report better mental health may be more likely to follow their prophylactic (preventive) treatment as prescribed, according to a new study based on a survey of 78 adolescent and adult males in Brazil. Researchers said this finding “underscores the need for [clinicians treating people with…
Becoming educated and informed about hemophilia is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your hemophilia journey.
There is no cure for hemophilia yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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