Self-Infusion as a Life Lesson
By Jeff Cornett RN MSN, Vice President of Research and Public Policy
“Self-infusion” is hemophilia jargon. Everyone in the bleeding disorders community knows what it is. The general public is clueless. Observing the teen boys in my cabin at Camp Wannaklot a few weeks ago, I’m convinced that it has value way beyond the medical benefits.
Let’s bring the uninitiated readers up to speed first. People with hemophilia don’t have enough of a certain protein in their blood for it to clot normally. The treatment for hemophilia is to put more of that protein in the blood. The protein is a medication called factor concentrate that comes from the pharmacy as small vials of powder. Sterile water has to be added to the powder to make a solution, which is pulled up into a syringe and then injected directly into a vein with a needle. Most people with hemophilia have to do this several times a week.
If you can do this procedure yourself – mix up the medication, put a tourniquet on your arm, find a vein, stick the needle in it, and inject the medicine – you are a “self-infuser.” You have mastered “self-infusion.” In hemophilia, it’s common. In the broader society, it’s mind-blowing. When factor concentrate became widely available in the 1970s, registered nurses and physicians were the only ones giving intravenous medications. To say that you were going to teach a patient to prepare and inject an intravenous drug was revolutionary. To say that you were going to teach parents to do it to toddlers was unheard of. To say that you were going to teach 7 and 8 year olds to do it themselves was insanity.
But now self-infusion is the norm in the U.S. for people with moderate and severe hemophilia. Children start out learning to mix the medication. They are taught how to find a suitable vein. All of them will tell you, though, that the hardest part is that first stick: learning to concentrate on technique while ignoring the pain of the needle. There’s a reason Hemophilia of Georgia calls its award for self-infusers, “The Mighty Sticker Club.” Not only is it scary, but your brain is telling you not to do something that hurts.
I’ve known of some benefits of self-infusion for years. People with hemophilia who self-infuse are not tied to an emergency room or clinic. They can treat bleeding quickly. They can take medicine regularly to prevent bleeding from occurring. People who self-infuse have a greater sense of independence.
I want to add another benefit to that list that I saw at camp. People who self-infuse have a greater sense of self-confidence. When faced with a task that is scary and uncomfortable, they have learned that if they take precautions and “just do it,” the task will probably become less scary and easier, especially the more times they do it.
At camp we have activities to challenge campers, especially teens. At the top of the list for most is the high ropes course. Forty feet in the air, they maneuver across obstacles while tethered to a cable. If you watch who is leading the group and taking on all of the challenges, it is almost always the boys who self-infuse. It is usually the boys who have bleeding disorders that don’t require self-infusion who struggle greatly to overcome their fear of heights and of falling.
I believe this self-confidence is helping create a new generation of leaders in the bleeding disorders community. At Hemophilia of Georgia we are committed to fostering it through our Leaders in Training program. Thank you to all of those parents and nurses who gave a big boost to our future leaders’ self-confidence by teaching them self-infusion.