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We’ve discovered 63 headlines written by Hemophilia News Today during the past 3 months.

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Top Hemophilia News Today News

FDA Approved Hundreds of Drugs Without Evidence They Work. Many Are Dangerous.

FDA Approved Hundreds of Drugs Without Evidence They Work. Many Are Dangerous.

100% Left coverage: 1 sources

Patients serve as the unwitting guinea pigs — with very real consequences.See the Story

Gene Therapy Cuts Bleeding and Medicine for Hemophilia B Patients for Over a Decade

Medical · Galicia

Gene Therapy Cuts Bleeding and Medicine for Hemophilia B Patients for Over a Decade

It was found that those with severe hemophilia B have less than 1% of normal factor IX activity, often experiencing spontaneous bleeding that can cause joint damage or life-threatening events.See the Story

Ways to offer the gift of respite to a hemophilia caregiver

New Mexico · New Mexico

Ways to offer the gift of respite to a hemophilia caregiver

A caregiver needs respite from the duties of watching over a chronically ill patient, columnist Cazandra Campos-MacDonald writes.Read Article

Being present is what makes my husband a great dad

Living with hemophilia and epilepsy has shaped much of my husband’s life — but fatherhood transformed it. Before our daughter was born, Jared, my husband, already carried the weight of two chronic conditions. He’d long made peace with a life of calculated risks, limited physical activity, and the unpredictability that comes with bleeds or seizures. But becoming a dad changed how he carried those things. It didn’t erase the hardship. Instead, it …Read Article

Health is not defined by a diagnosis

When I was diagnosed with hemophilia B and von Willebrand disease in the 1970s, I was just 10 years old. Back then, most people didn’t believe girls could have hemophilia. I was told that my “deep blood” didn’t clot properly and sent on my way. Bleeding disorders didn’t run in my family, so my parents were completely clueless about what to expect. For a long time, I let my bleeding problems shape how I saw myself: disabled, fragile, different. B…Health Read Article

Immune tolerance induction lowers treatment costs, if successful

Successful immune tolerance induction (ITI) — a type of treatment that aims to re-educate the immune system to prevent the formation of inhibitors, or neutralizing antibodies targeting clotting factors — was associated with lower treatment costs in hemophilia A patients with inhibitors, a study in Brazil reported. Conversely, treatment costs were up to 7.5 times higher in patients for whom ITI failed. The factors that most contributed to increas…Mississippi · Mississippi Read Article

Finding the courage to ask questions as a hemophilia parent

At 6 p.m., Monday through Friday, my television is faithfully tuned to “Jeopardy!” The theme song and sounds of the buzzers usher in a comforting ritual each night that’s part of my home. “Jeopardy!” is a long-running quiz show where contestants are given the answers and must respond with a question. I can tell how successful I’ll be when scanning the categories. If it’s classical music, the ’80s, or religion, I’m optimistic. However, if it’s wo…United States · United States Read Article

Replacement therapy helped pregnant woman manage hem B

A woman carrying a hemophilia B genetic mutation received regular factor IX (FIX) replacement therapy during pregnancy and successfully delivered her baby with no severe bleeding complications, a case study reported. Due to a history of bleeding associated with miscarriages and vaginal bleeding during pregnancy, the 37-year-old woman sought care at a hospital in Tokyo. Although severe bleeds are rarely seen in female hemophilia carriers during p…Tokyo, Japan · Tokyo Read Article

A man with hemophilia B shares his gene therapy story, part 3

In the last of a series, columnist Jennifer Lynne talks with Chip Hailey about how gene therapy has transformed his life with hemophilia B.Mississippi · Mississippi Read Article

Moving helps me see hemophilia’s varied effects on my sons

While packing for a move, columnist Joe MacDonald marvels at the differences between his two sons' experiences with hemophilia.Mississippi · Mississippi Read Article

What decades-long diagnosis delays mean for women with von...

Laughable. That’s how Heidi Bentz and Lucrecia E. Choto, two women who struggled for years to receive a proper diagnosis of von Willebrand disease (VWD), described the results of a 2004 survey by the U.S. Centers for Disease Control and Prevention (CDC) of 75 women who had the disorder and were being treated at specialized hemophilia treatment centers (HTCs). The CDC found that the average time between the onset of bleeding symptoms for these wo…Los Angeles, California · Los Angeles Read Article

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