In this video from the Centers for Disease Control and Prevention, learn how children with hemophilia can play and live safely. The simple animation features four boys who all have hemophilia but love to play sports. MORE: How hemophilia is inherited The film advises that…
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The advancements in modern medicine have meant that people with hemophilia are living longer than ever, however, this brings its own set of problems for the medical profession. People living with the disease are just as likely to have other health issues when they get older as those without hemophilia,…
When young Max Levy had to have a port put in his chest for hemophilia medication, his family nicknamed him Iron Man after one of his favorite Marvel action heroes. The story touched a lot of hearts and was even shared by Robert Downey Jr. on his…
One of the major hurdles people with hemophilia face is complying with their medication schedule — in particular, injecting themselves several times a week with clotting factor. MORE: Seven recommended books to learn more about hemophilia Clotting factor has a relatively short half-life (the time it takes for a person’s…
News
New Version of Possible Gene Therapy for Hemophilia B, SPK-9001, Enrolling More Patients in Trial
An ongoing Phase 1/2 clinical trial evaluating a gene therapy, SPK-9001, in people with hemophilia B is expanding its enrollment by up to five more patients, who will be given a new version of the therapy, its developer announced. One patient in this group has already received SPK-9001 produced under…
Social Clips
How Kids Can Explain Hemophilia to Their Friends
https://www.youtube.com/watch?v=z3f8elOVOrU This children’s video from Centers for Disease Control and Prevention focuses on how to tell your friends that you have hemophilia. MORE: How kids can play safe with hemophilia Billy, a young boy with hemophilia, answers some of the questions that his friends ask about the disease. He…
A new online service allows patients with bleeding disorders like hemophilia to share important information about their treatment and bleeds with their medical team in real time. MORE: Five tips for living healthily with hemophilia The HemaGo XChange portal was created by Novo Nordisk A/S as an update to their existing website…
This video, shared by Colleen, is all about a mobile app from Pfizer that helps hemophilia patients track bleeds, infusions and factor supply. It also allows those living with the disease to track their daily physical activities, steps and heart rate to help…
Social Clips
How Diet Can Help With Hemophilia Management
Eating well is important for everyone, but particularly for those living with hemophilia. Eating a diet that encourages strong bones and muscles and helps keep you at a healthy body weight is essential. MORE: Young boys explain what it’s like to live with hemophilia Obesity is becoming a major problem when it…
An experimental form of genome editing called clustered regularly interspaced short palindromic repeats or CRISPR/Cas9 could offer a faster and cheaper method of treating people with hemophilia, compared to the current DNA-editing method. Because hemophilia is due to DNA mutations, the genome editing could be used to efficiently slice at the DNA, removing…