Hemophilia is a genetic disorder that prevents blood clotting. Most common in men, there are two main types of hemophilia: hemophilia A and B. Below is a curated list of recommended reads for family members, friends and carers of patients with hemophilia, with help from Good Reads and Alibris.
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Hemophilia News Today brought you daily coverage throughout 2021 of the latest scientific findings, treatment developments, and clinical trials related to hemophilia. As a reminder of what mattered most to you during this year, here are the top 10 most-read articles of 2021, with brief descriptions of what made…
https://www.youtube.com/watch?v=qKRqJWVQRio This video from the Centers for Disease Control and Prevention takes a look at hemophilia and explains what the blood disorder means for those who suffer from it. MORE: Three tips for coping with a hemophilia diagnosis. Hemophilia patients and caregivers share how hemophilia affects their everyday lives…
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Living With Hemophilia: Brandston’s Story
To help prevent bleeds in hemophilia patients, many people living with the disease need to have infusions of clotting factor. In this video from infuzrTV, we meet super cute 5-year-old Brandston. Brandston has severe hemophilia A and needs to have clotting factor infusions on alternate days. MORE: …
More than 21 years ago, when my first child was born and diagnosed with severe hemophilia A, he was very fortunate to have first-generation clotting factors available. These were concentrates stabilized with albumin that were very safe. When the factor was reconstituted with sterile water, a seemingly…
Columns
What Does Hemophilia Look Like?
What does an illness look like? Sometimes a bald head, pale skin, or a mobility device are outward signs that someone has an illness. People would never know my sons have hemophilia by looking at them today. My oldest son, Julian, is 24. He lives on his own,…
Caeleb is super excited about starting the seventh grade this week. He loves the new town we are living in and is hopeful for the school year. He wants to play basketball. Now, most people would say that is a normal thing for a 12-year-old boy to want…
With my oldest son, who is now 21, I never worried about limitations. He played soccer for a season, and that was the extent of his athletic pursuits. He just did not like sports and to this day, he does not understand the basics of a football game,…