My youngest son was frequently hospitalized due to bleeding episodes brought on by hemophilia, and it often left me feeling trapped and stressed. I brought work projects with me, but the constant interruptions left me feeling powerless and unable to focus. My anxiety often soared. Caeleb picked up on my…
Discussion
I am the mother of Lean Archer De Guzman. This is our family’s journey after my son was diagnosed with severe hemophilia. When Lean was 5 months old, I noticed bruises appearing on his body. It was the first time I’d experienced a condition like this, so I was…
Discussion
A symphony is a long musical piece with a clear structure, traditionally divided into four sections called movements. Each has its own tempo, mood, and rhythm. The pauses between them give the audience time to take in each part. Usually, the first movement is fast and lively. Then comes a…
Discussion
More than half of people with hemophilia receiving prophylactic (preventive) factor replacement therapies at two treatment centers in Brazil did not collect enough medication to follow their prescribed treatment regimen, a real-world study has found. This gap between “prescription and practice” was evident even though Brazil provides universal,…
Discussion
I’ve realized that one of the greatest challenges of parenting is teaching children how to care for others without making them feel responsible for everyone’s well-being. This is especially complicated when one parent lives with a disability or chronic illness. My husband, Jared, has severe hemophilia B and epilepsy.
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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