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Dear Addy: Back to School

Dear Addy, I’m preparing for my first year of college, which also means managing my hemophilia without my parents and local HTC. How do I make this a smooth transition? Is there anything I need to do before I get to school? Sincerely, Back to School Jitters ________________________________________________________________________________ Dear Jitters, Congratulations on this exciting transition. […]

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Infusing Love: Careful What You Say

I had a “Hemo Mom” moment of synchronicity earlier this summer. In my last Infusing Love post, “Superheroes Need Rest Too,” I shared a story about my oldest son, Marques, being in the hospital six years ago with a port infection while I was also taking care of his four  -month-old twin siblings. Marques eventually […]

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Fit Factor: The Importance of a Whole Grain Diet

For many of us, our diet takes a back seat when our lives become busy and stressful. This leads us to consume more processed meals and snacks on the go. While these foods can be cheap and convenient, they have also been stripped of some of their nutritional value. Whole grain products rather than foods […]

Intern Introspective: That’s a Wrap for Eric

Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric and Cami […]

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Hepatitis: Not Just For Men

I have severe factor 1 deficiency (afibrinogenemia) and have been Hepatitis C (HCV) positive since 1998. My source of infection was one of my many cryoprecipitate infusions (cryo being the only available treatment for anyone with factor 1 deficiency until 2009, and for me until November 2014). What makes me different than most people with […]

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Infusing Love: Defining Normal

“How do you do it?” “Isn’t it difficult?” “Do you feel as though you need to wrap him in bubble wrap?” “How do you handle all of it?” Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]

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Dear Addy: Joint Replacement Surgery

Dear Addy, I’m a 50-year-old with hemophilia A, who’s right elbow has seen better days. I’m in the process of researching all my surgical options before making an appointment with my HTC. At this point in my life I’m really intrigued with an elbow replacement. Do you know of any other results throughout the community? […]

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HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress  The CHOICE Project was a first-of-its-kind data collection from people with hemophilia and other bleeding disorders. FOR IMMEDIATE RELEASE: July 21, 2016 Contact: Sonji Wilkes (202)-675-6984 or email at s.wilkes@hemophiliafed.org Hemophilia Federation of America (HFA) announced today that it will present new […]

Infusing Love: It’s About to Happen

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.  He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

HFA Continues Initiative with Centers for Disease Control and Prevention

The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded year three of a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).  The award allows HFA to continue its mission of assisting and advocating for individuals and families in the bleeding disorders community by further […]

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Assisting and Advocating for the Bleeding Disorders Community