Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
I never thought this day would come…. When Myles was first diagnosed with hemophilia A, I knew we had a long road ahead of us. Doctor appointments and worrying about safety both inside and outside of school, could always be scary. However, the scariest was the responsibility of making sure Myles always had the correct […]
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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