Hemophilia is a bleeding disorder caused by a mutation in genes that provide instructions for blood clotting factors — the proteins that help in blood clotting. Mutations in the genes for clotting factors VIII, IX, and XI result in their deficiency, causing hemophilia A, hemophilia B, and hemophilia C, respectively.
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Brandi’s journey with hemophilia Recently, I had the opportunity to speak with Brandi Worthington about her experiences as a woman living with hemophilia. Brandi was in her 30s when she received a diagnosis that linked hemophilia to her long-standing bleeding issues. This revelation came 23 years after the onset of…
A gene therapy being developed by ASC Therapeutics restored levels of the clotting factor missing in hemophilia A in a mouse model of the disease, and further tests in primates and human cells suggest the therapy might also work for people, the company announced. Results from…
I find myself stranded today. I had traveled from Texas to Denver for a week of classes before jetting off to Vermont for a speaking engagement. Before my arrival in Vermont, my return flight to Denver was canceled. What’s a girl to do? Having spoken at the New…
We all enter history at a different point; our entry into the timeline of the world marks where the future of us begins as individuals and families. Sometimes, we accelerate into the on-ramp that launches us, and sometimes we bumpily move toward our mark. On our first date, my now-husband…
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The Truths About Being a Carer
When I’m browsing online, I often see posts dedicated to carers of people with disabilities, calling them “unsung heroes” for sacrificing time and convenience for their loved ones’ well-being. As the wife of a person with disabilities, I can attest that is often the case. I believe carers deserve recognition.
Bleeding episodes, chronic pain, and the presence of inhibitors in children with hemophilia cause emotional stress for caregivers and increase their burden, according to an European study that recommended early access to support services. Caring for a child with hemophilia, particularly when coping with poor joint health, leads to emotional stress,…
I’ve found the stress of my first two months of fatherhood overwhelming. We’ve had many sleepless nights as we’ve adjusted to meeting the constant demands of a crying baby. My wife and I are incredibly sleep-deprived. But seeing my child smile when she sees my face first thing in the…
When you’re a parent to a child newly diagnosed with a bleeding disorder, the immediate concern is for your child. What do I do next? Will they be OK? What will life look like from now on? You find yourself searching for answers and developing a support system…
Baby Cittie turned 2 months old on March 18. It’s been a whirlwind couple of months filled with sleepless nights and endless smiles. Cittie is thriving; she’s doubled her weight, put on some chub, and loves to say “heeeeeeh” in an adorable coo-ey voice. Over the past…