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…
Search results for:
Hemophilia A is a rare bleeding disorder, affecting approximately 1 in 5,000 male births in the U.S.. Treatment has evolved from early clotting factors to newer therapies like Hemlibra (emicizumab-kxwh), approved for hemophilia A patients with inhibitors. Hemophilia Treatment Centers (HTCs) provide comprehensive care for individuals with bleeding disorders.
AI-generated summaries are for informational use only, based on content from multiple pages. They may not reflect full context. For complete details, see the original sources. Consult a qualified healthcare professional for medical advice.
Last week, I was on Facebook and a post I had been dreaming about appeared on my timeline. The U.S. Food and Drug Administration has approved a new therapy, Hemlibra (emicizumab-kxwh), for patients with hemophilia A and inhibitors. It’s the first new medicine for inhibitors in almost…
My Facebook friends fall into a few categories: biological family, colleagues and friends from my music and teaching days, high school and college friends and teachers, and my “bleedin’ folk” family. Raising two sons with severe hemophilia is a blessing because of the people in my life (I work…
Cazandra Campos-MacDonald, whose son lives with hemophilia, shares her experiences with hemophilia treatment centers and offers advice on how to find the right center to suit your needs.
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,…
Most people will tell you that their children are opposites. One is outgoing, the other would rather be left alone. One will talk until your head hurts, the other will utter only a few words when prompted. Their personalities are different, yet they have the same biological parents. I see…
Advocacy doesn’t always mean protests or politics; sometimes it begins with a parent learning everything they can to protect their child. One mother shares how speaking up for her sons with hemophilia helped teach them to one day speak for themselves.
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…
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,…
There’s one thing I want more than anything: When my sons are grown with their own families, I want them to come home for Thanksgiving (without my having to beg). I dream of sitting around the table with my sons, their significant others, and hopefully their children. I want…