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Top Hemophilia News Today News

Caring for a Parent? Three Ways to Receive Help

Mental Health · United States

Caring for a Parent? Three Ways to Receive Help

Caring for a parent can be overwhelming, but getting the right support is crucial—here are three ways to receive help when caring for a parent. The post Caring for a Parent? Three Ways to Receive Help appeared first on GeeksAroundGlobe.See the Story

Advanced liver organoids' FVIII stops bleeding in hemophilia A mice

Maryland · Maryland

Advanced liver organoids' FVIII stops bleeding in hemophilia A mice

Scientists have developed advanced liver organoids — lab-grown “mini-organs” that mimic the function of organs in the body — that are capable of growing their own functional blood vessels and producing clotting factors that could eventually be used to treat hemophilia, according to a study. In a mouse model of hemophilia A, the factor VIII (FVIII) clotting protein produced by the organoids was able to stop bleeding after an injury. “Our research…Read Article

When hospitals aren’t prepared for bleeding disorders

Philippines · Philippines

When hospitals aren’t prepared for bleeding disorders

The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now — Jared has sworn off pool slides indefinitely! Still, it reminds us how fragile things can be when hospitals aren’t prepared to handle hemophilia. The report said: “Lacerated upper lip due t…Read Article

Connection is vital for women in the hemophilia B community

Columnist Jennifer Lynne reflects on a women's retreat, where shared stories revealed gaps in medical care and the need for community.Stone Mountain · Stone Mountain Read Article

Patient in Germany gets hemophilia B gene therapy Hemgenix

The first hemophilia B patient in Germany has received the gene therapy Hemgenix (etranacogene dezaparvovec), according to CSL Behring, the therapy’s developer. “The treatment of the first patient in Germany with Hemgenix marks a milestone in hemophilia B therapy,” Christian Wieszner, managing director of CSL Behring Germany, said in a company press release. “Treatments such as gene therapy have the potential to enable people living with haemoph…Germany · Germany Read Article

Not everything is as it seems with bleeding disorders

Columnist Cazandra Campos-MacDonald has learned that not everything is as it seems when it comes to her sons' hemophilia.California, United States · California Read Article

Safety, efficacy of Hemlibra for Hem A confirmed in review study

Hemlibra safely reduces bleeding episodes in people with hemophilia A without inhibitors, per a review study that confirmed its efficacy.Brazil · Brazil Read Article

Making imperfect choices is part of living with hemophilia

I recently came across a social media post that hit home. It began: “Never judge someone with a chronic illness if they …” and went on to list things like skipping meds, eating foods that might trigger symptoms, resting all day, or even doing something that looks “wrong” to outsiders — like enjoying a drink at a party, lifting weights, or ignoring symptoms for a while. I found myself nodding with every line. And I thought of my husband, Jared. J…Read Article

Tips for hurricane preparedness with a bleeding disorder

Mother Nature was not kind to my area of Florida last year. First came Hurricane Helene, bringing widespread flooding. Just two weeks later, Hurricane Milton struck, unleashing high winds and another round of devastating floodwaters. The effects are still visible today: Businesses have shuttered, restaurants remain closed, and the damaged elevators in my condo now need to be fully rebuilt. When hurricane season rolls around, most people stock up…Evacuations · Florida Read Article

When scars from my IV infusions lead to false assumptions

Years ago, I attended a bleeding disorders conference where a person with hemophilia shared about an encounter they had with a law enforcement officer during a routine traffic stop. In order to appreciate the exchange, it’s important to understand that those of us with hemophilia are missing a protein necessary to help blood clot. Thankfully, there are medications available to replace this protein, which are administered intravenously or into a …Read Article

Immune Markers May Predict ITI Response in Hemophilia A: Study

In people with hemophilia A, certain immune markers in the blood may help predict patient responses to immune tolerance induction (ITI) — a treatment regimen used for individuals who develop inhibitors after factor replacement therapy — according to a new study by researchers in Brazil. Inhibitors, neutralizing antibodies that develop in some patients, are a major challenge in hemophilia care because they can make replacement therapies less effe…Brussels · Brussels See the Story

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