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3 weeks ago | 
hemophilianewstoday.com | Jennifer Lynne |Joe MacDonald |Cazandra Campos- MacDonald
It’s that time of year again when brackets are busted, Cinderella stories happen, and basketball fans everywhere are glued to the television for the madness of March. The NCAA basketball tournament is full of buzzer-beaters, heartbreak, and jaw-dropping comebacks. And oddly enough, for many of us living with bleeding disorders, it all feels strangely familiar. This year, I filled out my bracket with optimism, placing my hopes in the Wisconsin Badgers.
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1 month ago | 
hemophilianewstoday.com | Jennifer Lynne |Jacob Harney |Cazandra Campos- MacDonald |Joe MacDonald
There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice. When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when specialists insist that “women don’t have hemophilia and they aren’t bleeders” — it wears you down. It’s exhausting and infuriating. And for countless women with bleeding disorders, it’s also terrifying.
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1 month ago | 
hemophilianewstoday.com | Steve Bryson |Lindsey Shapiro |Patricia Inacio |Joe MacDonald
Children with hemophilia have problems with dynamic balance — the ability to maintain balance while moving — and an increased risk of falls compared with healthy peers, according to a new study by two researchers in Turkey. The findings showed, however, that such impairments were not related to joint involvement and did not affect quality of life in this patient population.
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1 month ago | 
hemophilianewstoday.com | Lindsey Shapiro |Jennifer Lynne |Joe MacDonald |Cazandra Campos- MacDonald
The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the changing unmet needs and challenges faced by rare disease patients over time, according to the nonprofit.
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1 month ago | 
hemophilianewstoday.com | Steve Bryson |Marta C. Figueiredo |Margarida Maia |Joe MacDonald
A greater range of motion before surgery is associated with better post-surgical outcomes for people with hemophilia who undergo knee replacement surgery. That’s according to a recent study that also found that having the surgery on both knees at the same time had a negative impact on the overall efficacy of the procedure. The study, “Influencing factors of the outcome of patients with haemophilia after knee replacement–a retrospective study,” was published in BMC Musculoskeletal Disorders.
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2 months ago | 
hemophilianewstoday.com | Alliah Czarielle |G Shellye Horowitz |Joe MacDonald
When people talk about hemophilia, some deliberately avoid calling it a disability. Instead, they’ll say “a medical condition” or “a health challenge,” as if disability were a negative label. Some who embrace the positive thinking movement even argue that people with hemophilia shouldn’t see it as a disability, pushing the idea that they should overcome their limitations at all costs.
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Oct 29, 2024 | 
hemophilianewstoday.com | Andrea Lobo |Lindsey Shapiro |Joe MacDonald |Alliah Czarielle
People with hemophilia are more likely to be infected with the SEN virus (SENV), which is associated with blood transfusion hepatitis, or liver inflammation, than healthy people, a study in Iran suggests. The virus was detected in more than half of patients with hemophilia A and most commonly in those with more severe disease.
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Sep 13, 2024 | 
hemophilianewstoday.com | Margarida Maia |Lindsey Shapiro |Joe MacDonald |Alliah Czarielle
Almost two-thirds of men with moderate or severe hemophilia A have joint problems that cause pain and reduce their quality of life, even when they’re on factor replacement therapy to reduce the frequency of bleeding episodes, a real-world study shows. “Overall, the data indicate that joint problems still represent a substantial burden in the care of [hemophilia A],” the researchers wrote.
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Sep 5, 2024 | 
hemophilianewstoday.com | Cazandra Campos- MacDonald |Joe MacDonald |Lindsey Shapiro |Alliah Czarielle
I live in the high desert of New Mexico, where we have each year. It’s a perfect place to hike, bike, climb, and run. The beauty of this place is undeniable. Yet despite all its splendor, I often find myself yearning for the storms. Right now, we’re in the monsoon season, which typically runs from June through September. This period brings heavy rains in the evenings, a nice break from the daytime heat of the summer sun.
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Sep 5, 2024 | 
hemophilianewstoday.com | Joe MacDonald |Lindsey Shapiro |Alliah Czarielle |Katherine Poinsatte
I must admit that, as a father, I dreamed of greatness for my sons. While Cazandra, my wife, was pregnant with each of my boys, I envisioned a global career for them that would transform the world. With my measurement of success as a guiding light, I imagined the ease with which they’d achieve their dreams. In my fantasy, they wouldn’t struggle or want for anything.
