Managing fear while raising a child with hemophilia
Hemophilia News Today
by Cazandra Campos-MacDonald
6h ago
Raising two sons with severe hemophilia A has been a journey filled with ups and downs, joys and fears. I lived in constant fear when my first son, Julian, was a baby. Not only was I concerned about feedings, diaper changes, and making sure he was breathing in the middle of the night, but the “what ifs” of a bleeding disorder were debilitating. What if he fell and started bleeding? What if he had a spontaneous bleed that I couldn’t detect? What if he needed emergency care and I couldn’t get to the hospital quickly enough? What if he had an internal bleed in his brain? These thoughts consumed ..read more
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Hemophilia bleeding didn’t stop my husband from parenting, working
Hemophilia News Today
by Alliah Czarielle
3d ago
This past week has been a whirlwind of activity for our family. My husband, Jared, who has severe hemophilia B, experienced a knee bleed that required careful management. But that didn’t stop him from fulfilling his responsibilities around the house and making progress with his budding bottled food business. The week served as a reminder of the resilience and adaptability required to live with hemophilia, and how we continue to push forward despite the challenges. When Jared’s knee started to bleed, we immediately knew what needed to be done. Over the years, we’ve become adept at handlin ..read more
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A conversation with Iván Girón, superstar dad and parent advocate
Hemophilia News Today
by Jennifer Lynne
6d ago
This Father’s Day, as we celebrate the role of fathers in our lives, I can think of no one more deserving of recognition in our bleeding disorders community than Iván Girón. At Genentech’s Rare Blood Disease Summit in San Francisco last year, I was immediately drawn to Iván and his beautiful daughter, Naomi. They were seated on the opposite side of the room, and their connection to the program piqued my curiosity. Little did I know that their story would leave a lasting impression on me. Iván lives with moderate hemophilia A, and his story is truly inspirational. However, instead of focusing ..read more
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Hemlibra is safe, effective in older patients with other conditions
Hemophilia News Today
by Patricia Inácio, PhD
6d ago
The efficacy and safety profiles of preventive treatment with Hemlibra (emicizumab-KXWH) are not affected by age or the presence of some simultaneous health conditions, that is, comorbidities, in older people with hemophilia A. The findings are the result of a post hoc analysis of pooled data from Phase 3 clinical trials that tested Hemlibra in hemophilia A patients. A post hoc analysis is one that’s planned and conducted after a trial has been completed. “Outcomes in older people with [hemophilia A] with [cardiovascular] risk factors and [HIV/hepatitis C] comorbidities were consistent with t ..read more
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Processing unpleasant emotions amid difficult caregiving situations
Hemophilia News Today
by Joe MacDonald
1w ago
Picture this: I’ve finally settled down for some peace and quiet with my wife. I’m holding a nice glass of wine, and she’s sitting in her favorite rocking chair. Our two boys have found refuge in their bedrooms, and all seems right in the world. I turn to Cazandra and say, “I’m grateful we can rest this evening. I’m exhausted and feel like I have nothing more to give.” No sooner have I finished my sentence than we hear a noise from my youngest son Caeleb’s room. What began as a whimper turns into all-out crying, and we rush to check on him. When we arrive, he looks at both of us and says the ..read more
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With my son entering adulthood, we both face a big transition
Hemophilia News Today
by Cazandra Campos-MacDonald
1w ago
My youngest son, Caeleb, recently graduated from high school and, at 18, is legally recognized as an adult. This milestone brings a host of new responsibilities and rights: He can vote, buy and sell property, sue or be sued, and enter into binding contracts. Despite all our preparation for his coming of age, there’s still much to do in helping him transition into this new stage of life. The most significant consideration for Caeleb as he enters adulthood is his health. As a young adult with severe hemophilia A with an inhibitor, he’ll transition from pediatric to adult care at the hemophilia ..read more
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Recognizing the signs of abnormally heavy menstrual bleeding
Hemophilia News Today
by Jennifer Lynne
1w ago
I cannot stress enough how profoundly heavy menstrual bleeding can impact everyday life. Imagine needing to find a bathroom nearly every hour, seven days a week. It can make certain career choices extremely challenging and disrupt daily activities, including school and athletics. When I was young, I didn’t realize my periods were abnormal. Despite being diagnosed with von Willebrand disease and hemophilia B at 10, I didn’t connect the dots. We didn’t talk about periods in my family, and since bleeding disorders weren’t a known issue for us, we were in the dark. At a recent Coalition for Hemop ..read more
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B-cell therapy BE-101 granted FDA’s orphan drug status for hemophilia B
Hemophilia News Today
by Andrea Lobo, PhD
1w ago
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to BE-101, Be Biopharma’s B-cell treatment candidate for hemophilia B. This designation is given to therapies that are meant to treat rare diseases, defined as conditions affecting fewer than 200,000 people in the U.S. It offers several incentives, including seven years of marketing exclusivity for the therapy if it’s approved, exemption from user fees, and eligibility for tax credits on qualified clinical trials. “BE-101 has the potential to be the first and only Factor IX replacement therapy that is extremely du ..read more
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Returning to daily life after celebrating milestones
Hemophilia News Today
by Joe MacDonald
2w ago
For the last two weeks, my family has celebrated a significant milestone for my youngest son, Caeleb. He graduated high school and now looks forward to life as a college freshman. My boy is excited about this new adventure. While I’m grateful that he celebrated a mountaintop experience, I realize the most significant part of his journey lies before him. I find myself wondering, “What scars from childhood will Caeleb carry into adulthood?” A chronic illness doesn’t respect the boundaries of age. In my son’s case, hemophilia continues to make its presence known. Gone are the days when Caeleb su ..read more
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The reality of being both parent and caregiver to sons with hemophilia
Hemophilia News Today
by Cazandra Campos-MacDonald
2w ago
Before I became a parent, I never imagined I’d be finding veins and accessing ports. But after my sons were born with severe hemophilia A with inhibitors, my husband and I quickly learned the basics of caregiving, by God’s grace. Over the years, people have said, “Cazandra, how do you do it? I’m so sorry.” I immediately respond, “There’s no need to be sorry. I do what needs to be done because I love my sons.” Being a mom is one of the greatest joys of my life. However, being a parent is not the same as being a caregiver. Caring for a child with special medical needs involves additional respon ..read more
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