Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
I recently had the opportunity of volunteering to be one of the nurses in the infusion center at the annual HFA symposium. I had the privilege of working with two amazing nurses that work in the hemophilia community. I quickly realized that they both had so much knowledge in the hemophilia world! l learned so […]
This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I’m pretty lucky to have a husband who is very involved in Maddox’s infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]
Dear Port: Over the past five years you were a big part of how well I did infusing my son, Laithan. As much as he would fight me during infusions by moving around, I knew that I could always count on you to work. Don’t blame yourself for having to be removed! In five years […]
Does anyone really like getting stuck with needles? I don’t and I only gets labs drawn yearly and have my flu shot once a year. When you have hemophilia and you have serious needle phobia, infusions don’t go well. My son Chris, who is now 30, admits he still has severe needle phobia. Chris’s first […]
Note: This is part two of a three part series. Click HERE to read part one. Although my Benny is still not self-infusing, the last few months have been a positive journey for us! As noted in my last blog, my 12-year-old has been extremely anxious and stressed about doing his own needle stick. We […]
I don’t think most people would say that they like to be stuck with needles on a regular basis. I have heard stories of big, manly, tattooed men on the brink of tears when a needle approaches, but those of us with children who have a bleeding disorder know that we have some of the […]
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