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Blood Sisterhood

Girls Have Hemophilia, Too!

My childhood was relatively normal. I grew up the oldest of three children, had two caring and attentive parents, and did well in school. As a family, we went on regular vacations. I faced many challenges growing up and did not know at the time that they were related to an undiagnosed bleeding disorder. There […]

Mom's Blog_World Aids Day

Keeping Their Memory Alive: World AIDS Day

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

Developing Autonomy vs. Relying on Others

The transition from childhood to adulthood can be full of exciting opportunities to have new experiences and shape one’s own unique individuality. However, adulthood can also come with its own set of challenges, including decreased reliance on parents and taking important steps to reach personal life goals. For young adults living with bleeding disorders, additional […]

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CHOICE: Improving HFA Services for the Community

To all of you who have taken the time to participate in the CHOICE (Community Having Opportunity to Influence Care Equity) Project by taking the survey, thank you. For those who have yet to take the survey, please do (call 800-230-9797 or go to choice.hemophiliafed.org). CHOICE is about the bleeding disorders community and working with […]

Blood Sisterhood3

I was a Runner; Now I’m a Warrior

Most of September 24th, 2012 is still a blur in my mind, but what clearly stands out is that it was the day my body stopped moving forward. My name is Courtney, and I have von Willebrand Disease (vWD) Type 1. People with von Willebrand Disease have decreased or malfunctioning von Willebrand factor and cannot […]

Inhibitor_Katzman

Inhibitors Will Not Inhibit Our Family

I’m sitting and watching my son Blake play catch in the park with a friend. He runs for the ball and trips on a rock and lands in the dirt. I stay seated…and it’s really hard. I remind myself that we are in a different place now, but it’s still very hard. A year ago, […]

FitFactor Karate

A Stronger and Healthier Body Means Less Bleeding

  I have hemophilia. When I was a in school, my parents told me that I couldn’t play football, baseball, soccer, or other contact sports, because I was a “bleeder.” I always wondered growing up, what does being a bleeder even mean? All I knew was that I bruised easily and wasn’t going to die […]

Thomas and Leland

Hemophilia: A Suite That Fosters Empathy

(Thomas Ford, on the left, with his cousin, Leland Smith on the right) I remember visiting my cousin Leland’s house from a very young age. Spending time with family has and always will be one of the most important things to me, but spending time with Leland was always different. My first memories of my […]

Beyond Hemophilia, filmed by Justin Lindhorst

Michael Jones is a 13 year old with hemophilia A. Michael doesn’t let his hemophilia slow him down, he enjoys playing baseball and staying active. Justin Lindhorst was a part of HFA’s Young Leaders program at Symposium and is now a part of HFA’s Media Task Force.

Step by Step Infusion, Produced by: Nicholas Reiser & Leland Smith

Nicholas Reiser explains the process of infusing himself with clotting factor. Nicholas Reiser and Leland Smith were both a part of HFA’s Young Leaders program at Symposium and are now a part of HFA’s Media Task Force.

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Assisting and Advocating for the Bleeding Disorders Community