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Hurricane Ian directly hit my condo in 2022. My mother and I evacuated to Orlando, Florida, and couldn’t return for weeks. It was long enough that “recovery” became its own kind of...
Most mornings, before the day can get its hands on me, I do exercises for my spine. They are not impressive. No one would film them. They are slow, deliberate movements on a mat, t...
I was scrolling Facebook last week when a post stopped me cold. It was from Ashley Hall, a mom I’ve come to know in this community. She has two boys with hemophilia A, one of whom,...
First in a series. This morning, my oldest son, Julian, 30, called me from Philadelphia, where he is living for two months before packing up his bags and moving again. He is a prof...
Lately, I’ve come across more conversations about what it means to live independently with a bleeding disorder. They usually focus on big milestones: moving out, going to college,...
There’s a moment I’ve heard described so many times that it feels like a shared memory. A woman finally learns the name of the bleeding disorder she’s carried for so many years wit...
Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always th...
Note: This column describes the author’s experiences with BeneFix (coagulation factor IX). Not everyone will have the same response to treatment. Consult your doctor before startin...
I went on a date with my husband, Joe, when I was a 19-year-old college freshman. Thirty-eight years later, we’re still together. Like most couples, we had our share of challenges...
Recently, my husband, Jared, and I asked our 7-year-old daughter what she knew about being a hemophilia carrier. It wasn’t a serious family meeting. There was no carefully prepared...
As a classically trained oboist, I enjoy attending the symphony, except when Wagner is on the program. I like to get there early and watch what happens before the performance start...
My son Caeleb recently had his wisdom teeth removed. Caeleb has severe hemophilia A with an inhibitor, but hemophilia hasn’t been the main focus in his life for years. Nevertheless...
Many years ago, my family attended the National Bleeding Disorders Foundation’s Bleeding Disorders Conference. My youngest son, Caeleb, was 8 at the time. Due to his hemophilia, he...
I’ve been thinking lately about how resilience is discussed in the Philippines. After major storms, familiar images circulate online: weddings continuing despite floodwater inside...
My oldest son, Julian, is a working actor in a touring production. For this show, he is trained to perform both male lead roles. Over the last six months, he performed one role, an...
Someone recently told me they thought they were experiencing arrival fallacy. I’d heard the term before. It describes the feeling of reaching a long-awaited goal, only to discover...
My Peloton bike doesn’t go anywhere. That’s the whole point. It sits in my bedroom, stationary, pedals turning against resistance I set myself, wheels spinning in place while the r...
Recently, I posed a question to Hemophilia News Today readers on social media for Disability Pride Month: “Do you consider hemophilia to be a disability? Yes, no, or somewhere in b...
Due to my husband Jared’s severe hemophilia B, we keep a small, personal supply of factor replacement therapy in our refrigerator that typically is enough to cover one bleeding eme...
More than 30 years ago, my wife, Cazandra, and I began our work in the bleeding disorders community after our oldest son, Julian, was diagnosed with hemophilia. Since then, we have...
G Shellye Horowitz shares how learning to understand and share your story can help you communicate effectively with your healthcare team. The post Confidence starts with understan...
If I could go back in time, I would learn to control my anger sooner. I didn’t say unkind things or become physical, but my voice did get loud enough to frighten my children. After...
Growing up in Houston, I remember the now-defunct amusement park AstroWorld being a significant part of summer for many people. Its star attraction was the Texas Cyclone, a nearly...
Note: This column describes the author’s and his sons’ experiences with Hemlibra (emicizumab-KXWH). Not everyone will have the same response to treatment. Consult your doctor befor...
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