I spend a lot of time in the hospital, but not for the reasons most people think. As a hospice chaplain, I sit with patients who are nearing the end of life. It is a privilege to be with their families and friends as they prepare to say goodbye. The…
Discussion
I have medical records from my old hemophilia treatment center in Wisconsin dating back to the 1990s. Over the years, those old documents have turned out to be some of the most powerful tools in my healthcare journey. I was diagnosed in the ’90s with a rare…
Discussion
At the World Health Assembly (WHA), member states of the World Health Organization (WHO) unanimously adopted a resolution on Global Action to Advance Health Equity for People with Hemophilia and Other Bleeding Disorders to support better diagnosis, treatment, and fairer care for people with hemophilia and other bleeding…
Discussion
I picked my youngest son, Caeleb, up from the University of New Mexico in Albuquerque last week, and we started unpacking the car the minute we arrived home, his bike, electric wheelchair, walking stick, and everything else forming a pile in the garage. “Look, Dad,” he said. “This stuff is…
Discussion
When I was in the fifth grade, I’d look in the mirror every morning and hate who I saw. I believed I was ugly, unpopular, and weird, and the hand-me-down clothes I wore made me look different. I’d say horrible things to myself, like, “You really are a dog.” I…
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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