Hemophilia is a genetic disorder that prevents blood clotting. Most common in men, there are two main types of hemophilia: hemophilia A and B. Below is a curated list of recommended reads for family members, friends and carers of patients with hemophilia, with help from Good Reads and Alibris.
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Hemophilia is a genetic disorder that prevents blood clotting and is most common in men, with two main types: hemophilia A and B. Bleeding inside joints and muscles is a significant problem, causing long-term damage. Early intensive prevention may prevent bleeding and inhibitor development. Kogenate FS (octocog alfa) was a treatment for hemophilia A but was discontinued in 2022.
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A new study from Finland demonstrated that neutralizing antibodies (inhibitors) can develop in people with untreated hemophilia, and that early intensive prevention might prevent bleeding and inhibitor development. The research report, titled “Inhibitor development in previously untreated patients with severe haemophilia A: a nationwide multicentre study in Finland,” was published in…
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Explaining Joint Bleeding in Hemophilia
https://www.youtube.com/watch?v=NYdlke9Qo6w In this video from Medic Tube, find out how hemophilia patients can prevent joint bleeding. MORE: Researchers review guidelines on primary prophylaxis in hemophiliac children The video explains that people often think the main issue for those who suffer from hemophilia is…
Save One Life, the first globally focused organization to sponsor children with bleeding disorders one-on-one, recently celebrated its 15th anniversary. More than 130 guests from the hemophilia community worldwide gathered in New York City Sept. 29 at the Manhattan Penthouse on Fifth Avenue. The guest of honor was…
Last updated May 29, 2024, by Lindsey Shapiro, PhD Fact-checked by Joana Carvalho, PhD What is Kogenate FS for hemophilia? Kogenate (octocog alfa) was an approved treatment used to prevent bleeding episodes, including those occurring during surgery, in people with hemophilia A that has now…
I am writing to you on behalf of all the women with a hemophilia mutation. My blood sisters have varying medical diagnoses: asymptomatic carrier, symptomatic carrier, mild hemophilia, moderate hemophilia, and even severe hemophilia. Their diagnosis is often linked to the philosophies of their hematologist or hemophilia treatment center.
Greater awareness of hemophilia and its symptoms is associated with better adherence to treatment by patients, and those with more severe disease are most likely to use a treatment as prescribed, a study based on a new questionnaire shows. Responses were seen to validate this questionnaire, which addresses…
“Write about the first time you witnessed me with a bleed,” offered my husband Jared as we talked about my column over breakfast. Couples usually remember firsts. The first date. The first kiss. The first of anything special or unique to both of them, including the good and…
Severe hemophilia A patients using Esperoct (turoctocog alfa pegol) as a preventive treatment do well, with fewer bleeds or breakthrough bleeds, lower costs, and better life quality compared with other extended half-life (EHL) therapies, a modeling analysis suggested. The…
A new five-year alliance between Bayer and the World Federation of Hemophilia (WFH) Humanitarian Aid Program will deliver training, education and treatments to healthcare professionals in more than 60 underserved countries. ”Three out of four people with bleeding disorders living in developing countries do not have access to…