Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
By: Christopher Quesenberry Having a rare condition like hemophilia has never held me back from pursuing an active lifestyle. The demands of maintaining a high level of activity, however, ultimately resulted in joint failure. My right knee has been considered a “target joint” since I was in the fifth grade. By the time I reached […]
Note: This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. Pain is a serious medical concern in our country. Approximately […]
By Elaine Chan, MSW, MPH At any point, families living with a bleeding disorder can experience financial hardship because of their medical situation. HFA’s Helping Hands Program has become a safety net for thousands of families throughout the years. Helping Hands has provided many families with assistance for expenses like housing, utilities, and transportation. In […]
Erik von Willebrand, a Finnish physician, noticed several young girls in one family shared symptoms of a bleeding disorder. The year was 1924, and von Willebrand recognized that the girls’ symptoms were different from those of someone with hemophilia, a disease mostly affecting males. He called this new disease pseudohemophilia, or false hemophilia, but others […]
By: Kyle McKendall, Staff Member Photography by Kevin Daniels Taken from the Summer 2016 issue of Dateline: Full PDF available here For the first time ever, HFA offered a comprehensive Spanish-language program at its annual Symposium, held in Las Vegas from March 30-April 2, 2016. More than 50 attendees participated in the program and attended […]
By Michelle Morath “Healthy Bodies Bleed Less” continues to be the mantra of HFA’s FitFactor program. It is our goal to get every community member at least considering the positive effects that physical activity and a healthy diet can have not only on their joint health, but also their overall health and sense of well-being. […]
By Michael Zolotnitsky, PT, DPT Growing up with hemophilia made waking up with bruises, joint pain, or the inability to bear weight on my ankles a normal occurrence. Time and time again, my mother had to drive me to the local hematology clinic to have factor infused. I did not feel like a normal child. I […]
Note: The following appears in our Spring 2016 edition of Dateline Federation. Please see the full issue for all the amazing community support shown for Bleeding Disorders Awareness Month! For the past 30 years, the bleeding disorders community has unofficially recognized Hemophilia Awareness Month during the month of March. The name originated from a proclamation made by […]
It is recognized in the bleeding disorders community that opioid medications can be a helpful addition to the treatment plan for patients experiencing refractory acute pain, as well as for those with long-standing chronic pain resulting from joint disease. Opioids as a class of drugs are used for many types of pain. According to the Centers for Disease Control and […]
“Throughout the CHOICE Project we heard from numerous women about their lack of access to the diagnosis and care they need as patients with bleeding disorders. Many women explained that doctors told them women can’t have hemophilia, or a bleeding disorder, and otherwise how providers were dismissive of their symptoms and pain.” — Wendy Owens, […]
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