Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]
Below, we’ll introduce you to three such people: Trevor Dunn, a young man with von Willebrand Disease, Dawn Evans, an adult woman who is asymptomatic carrier of Hemophilia A, and Barry Haarde, an adult male with severe Hemophilia A. All of them have discovered a form of physical activity that is enjoyable and adaptable to […]
My 11-year-old, Natalie, is not your typical 11-year-old. She is whip smart, savvy, and mature beyond her years. I suppose that comes with being the youngest of three siblings. You have to wise up when your older siblings are trying to pull one over on you since the day you were born. Natalie has recently […]
My 10-year-old daughter, Natalie, has been officially DNA tested and is a carrier of the hemophilia gene. This wasn’t particularly surprising or upsetting to my husband or myself, or even Natalie. For a child, she has a remarkably good grasp on the genetics of hemophilia and she understands what it means to be a carrier. […]
There are many dates and events in our lives that we think of as markers: birthdays, anniversaries, graduations, and holidays. For some it’s buying their first car or even a home. Sometimes they are things like the death of a loved one or loss of a job. We have memorabilia such as pictures, diplomas, obituaries […]
On Thursday, January 22, 2015, the CDC hosted a webinar to help women with a bleeding disorder recognize the signs and symptoms of reproductive issues. The webinar was facilitated by Andra H. James, MD. Dr. James is Consulting Professor of Obstetrics and Gynecology at Duke University, where she also has an appointment in the Division of Hematology. Dr. […]
By Emily Boyer I remember the days that followed Logan’s diagnosis in snapshots. I remember some things very vividly and other things I wouldn’t remember if I was shown a videotape. It all came together on one big twisted rollercoaster. One thing I do remember is the hematology team assuring us, almost confidently, that Logan’s […]
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