If you are active on social media and have a chronic illness, you’ve probably come across the term “spoonie.” The word comes from a woman’s explanation of how she has to manage her energy levels each day.  As she was in a cafe at the time, she grabbed a bunch of spoons…

When you live with a bleeding disorder, there are many things that are out of your control. When the next bleed will happen, how long a hospital stay will last, what the results of the blood work will tell you, and how much you will pay per unit…

It’s important for anyone with a chronic illness to eat a balanced diet, but children and adults with hemophilia should also include iron-rich foods as some of the body’s store of iron is lost during bleeding. MORE: How diet can help with hemophilia management. There are two different types of…

When you live with a bleeding disorder there are both good seasons and bad seasons. The good seasons are filled with scheduled prophy infusions, no bleeds, no missed days from school, and no calls from the school clinic. It just doesn’t get better. The bad seasons are when hemophilia…

Von Willebrand Disease (VWD) is a genetic blood disorder where the person affected is deficient in a protein that helps blood clot — the Von Willebrand factor.  According to the Hemophilia Federation of America, the disease is genetic and often takes a while to be diagnosed as the…

Having a service dog can greatly enhance the life of someone living with a chronic disease. They allow patients to regain some of their independence by helping with small everyday tasks like opening and closing doors, fetching meds, acting as a prop or support as their owner stands, switching on lights and attracting attention…

https://www.youtube.com/watch?v=rCZunn4ML5o If you’re living with a chronic illness, it’s easy to slip into a malaise and feel sorry for yourself. This isn’t a helpful state of mind and it potentially means you’re missing out on life. In this video from NewLifeOutlook, Anna Scanlon shares her five…

https://www.youtube.com/watch?v=dpUNgYbsQms If you have a chronic illness, you know just how much energy it takes to complete your daily chores and common household tasks. In this video from newlifeoutlook, Jennifer shares some practical tips to help make life a little easier for anyone suffering from a chronic illness. MORE: What is…

Hemophilia in children is diagnosed at an average age of nine months, and most children are diagnosed by their second birthday. If your pediatrician suspects your child has hemophilia, you may be concerned about their first appointment with the hematologist. To ease your worries, we’ve put together some tips to help you through…

The U.S. Food and Drug Administration (FDA) has granted fast-track status to SB-525, a clinical gene therapy for hemophilia A developed by Sangamo Therapeutics in partnership with Pfizer. SB-525 delivers a human factor VIII cDNA construct and synthetic liver-specific promoter to the cell’s nucleus by using recombinant adeno-associated virus (rAAV). The…