A mother's story about living with inhibitors

My name is Ashley Druckenmiller. I am raising 2 sons with hemophilia with inhibitors. I can tell you it is not an easy task. I can also tell you how much it helps to have support.

Our first son, Bode, was born in February 2006. About 2 months after getting his hemophilia diagnosis, Bode was diagnosed with inhibitors.

Our second son, Brystol, was born in May 2007. Soon after that, he was diagnosed with inhibitors. That made two.

A lot of people ask me what it's like to be the mother of 2 sons with inhibitors. Well, it has some downsides. For example, Bode was in the hospital a total of 40 days in 2008. In fact, most of our family photos are from hospitals.

One important thing that helps us manage is knowing we are not alone. We receive help from local organizations like Hemophilia of Iowa, as well as local doctors and hemophilia treatment center nurses. It was a problem, however, to find out that many general practitioners didn't know anything about treating hemophilia with inhibitors.

It was at this point I came into contact with the Novo Nordisk Consumer Council. I had my chance to help others and share my knowledge. All of us need to keep up the good work so other kids like Bode and Brystol can get the help they need.

If you are an adult or teen with an inhibitor, or a caregiver of someone with inhibitors—join us. Share your experiences and knowledge. I know from personal experience that the more I learn from people, the more my boys benefit.