A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia. Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the…

The month of May can be an emotional roller coaster for many. Social media fills up with parents bragging about their children’s latest accomplishments — honor society, college acceptance letters, awards, and recognitions among them. It’s a great thing to have a network for connection and celebration of each…

In keeping with its mission to change how members of the bleeding disorder community think about their condition, Octapharma USA has joined with GutMonkey to provide a challenging week-long, water-based experience aimed at boosting patient confidence in managing disease. With an Octapharma grant, 10 participants in “Leading X…

My 13-year-old son, Caeleb, is a victim of bullying. This school year had a better start than the previous one until a couple of boys decided to pick on my mighty warrior. Name-calling and lies are hurtful, but at least words don’t leave marks on our bodies. But when…

Spiral notebooks, pencils, glue sticks, and highlighters make my heart happy. These items signal the beginning of the school year. I have fond memories of buying new pencil boxes and the perfect backpacks for my sons. I always look forward to taking them shopping for school supplies. Now that my…

The holiday season brings happiness and joy to many. Homes are adorned with lights and decorations, and people wear clothing in festive colors. The excitement is contagious. However, many people find this time of year to be exhausting and even painful. When they are living with a rare or chronic…

Exercises to control posture could improve joint health in children with hemophilia and should form part of regular rehabilitation programs, a study suggests. The balance disturbances uncovered in the study could provide early signs of musculoskeletal disorders that could be prevented or reduced through prompt diagnosis and therapy, researchers…

It seems as if there is a day for everything: there’s National Wear Red Day, Boss’s Day, Rare Disease Day, Love Your Pet Day, and even National Margarita Day. And months are also observed for causes such as Blood Donor Month, Breast Cancer Awareness Month, and National Yoga Month. From…

If there is one word in the English language that drives me batty, it’s “chaos.” It implies a lack of control and an inability to stand on firm ground. It isn’t pleasant to be forced into a world that lacks any sense of stability. I must find a way to…

Last week, my wife, Cazandra, my youngest son, Caeleb, and I attended the annual meeting of the Hemophilia Federation of America, held in San Antonio. The grassroots, national organization promotes the health and well-being of those who manage chronic bleeding disorders. While attending the conference, we engaged with…