Three U.S. bleeding disorder patient organizations recently received funding support for their patients’ rights advocacy campaigns. The Milwaukee, Wisconsin, headquartered Great Lakes Hemophilia Foundation (GLHF), the New York City Hemophilia Chapter (NYCHC), and the Columbus, Ohio-based Ohio Bleeding Disorders Council (OBDC) have been…

Stop the Bleeding! is a comedy web series set at a fictional non-profit organization. The award-winning series features various members of the dysfunctional organization and the conveniently placed hemophilia treatment center (HTC) next door in a mockumentary style. MORE: Six of the best mobile apps for managing…

When your child is little and isn’t able to verbalize pain, you find yourself worrying constantly that you are missing something. “He’s crying, is he having a bleed? Or does he need a diaper change?” You must be the one who identifies why your little one is in distress.

The National Hemophilia Foundation hosts an annual meeting with workshops, exhibits, and social gatherings for the bleeding disorders community. It’s a time when consumers, providers, and industry come together to support one another. When you have been in the community for more than 20 years, the best…

“How many kids with hemophilia does it take to change a light bulb?” “None. Their mother will do it for them.” This is a joke that was told by a former HTC social worker friend. Of course, I chuckled, because I know there is an unfortunate amount of…

There have been seasons when hemophilia became the center of my family’s universe. A bleed would start and before it healed completely, it re-bled, or a new one began. Visits to the clinic for appointments, timed blood draws, unpacking factor and supplies, phone calls about co-pay assistance, factor…

Routine blood draws are a necessity when you have an active inhibitor. I try to get Caeleb’s lab work done at least every two months, and the results will give us his Bethesda unit (BU) and half-life status. Having a zero BU is ideal but that alone does…

This video from The Mighty shares some of the things a person living with a chronic illness might want to carry around with them on a daily basis. MORE: Five benefits of cannabis tea for chronic illnesses The survival pack contains some of the essentials needed to ensure you’re…

It amazes me how people with a bleeding disorder just go with the flow, living their lives and accepting their routines as normal. They forget that what they do on a regular basis is nothing short of phenomenal. A little boy self-infusing is an amazing sight to see.

Medical marijuana is gaining popularity as a complementary medicine to help with many symptoms associated with chronic illnesses. While many people are curious about how marijuana (or cannabis) may help improve their symptoms, they are also reluctant to smoke the substance. However, there are ways that medical marijuana can be administered, including…