We went out of town for vacation and I had to take my son to the ER for a bleed due. Unfortunately, none of the doctors were familiar with hemophilia. I knew more than they did. Instead of comforting my son, I spent my time educating doctors. Is there something I can do better next time?
You are an educator and always will be one when it comes to your son’s hemophilia. Because only a small fraction of people in the United States has hemophilia, it is a disease with which most doctors have little understanding or knowledge. So your experience is not uncommon, but nonetheless it’s not an easy position to be in.
There are things you can do BEFORE an emergency occurs and you have to go to an emergency room (ER) with your son and there are steps you can take WHEN you get to the ER to make sure your son receives the best care possible. Among its many resources on emergency preparedness, HFA has a “Surviving the ER” toolkit that provides tried and true tips from others living with hemophilia on the steps to take before an emergency happens. The toolkit includes what to do before an emergency, what to do just before you leave for the ER and what to do when you get to the ER. Also, discuss your ER experience with your son’s hematologist. The hematologist may have additional tips to help you manage the experience.
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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.