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Bleeding Disorders

 

Bleeding disorders are a group of disorders that share the inability to form a proper blood clot. They are characterized by extended bleeding after injury, surgery, trauma or menstruation. Sometimes the bleeding is spontaneous, without a known or identifiable cause. Improper clotting can be caused by defects in blood components such as platelets and/or clotting proteins, also called clotting factors.

 

Hemophilia occurs predominantly in males, but can occur in women. In about one-third of cases the disorder results from a spontaneous genetic mutation rather than by a family history of hemophilia. Hemophilia treatment may require life-long infusion of clotting factor based on the severity of the disorder. Average hemophilia treatment costs between $60,000 and $260,000 per year. Early recognition and prompt treatment of bleeds can help keep these costs down as well as reduce disability.

 

von Willebrand Disease is a bleeding disorder caused by a defect or deficiency of a blood clotting protein, called von Willebrand Factor. The disease is estimated to occur in 1% of the population; many are undiagnosed. vWD is a genetic disease that can be inherited from either parent. It affects males and females equally. A man or woman with VWD has a 50% chance of passing the gene on to his or her child. There are no racial or ethnic associations with the disorder. A family history of a bleeding disorder is the primary risk factor.

 

Other Factor Deficiencies: There are ten clotting factors that are necessary in forming a blood clot. Deficiencies in factors VIII and IX are well known to most people, but what of the other factor deficiencies? Not everyone is as familiar with these conditions because they are diagnosed so rarely. To date, deficiencies in eight of the lesser known coagulation factors have been documented in the medical literature. Many of these disorders were only discovered or described within the last 40 years.

News from HFA

  • Advocacy News: March 2024

    Word From Washington Federal Agencies According to the latest KFF Medicaid Unwinding Enrollment Tracker, more than 19 million Americans have lost Medicaid coverage since states were allowed to resume eligibility verifications following the COVID-19 public health emergency (PHE). At least 70 percent of Medicaid terminations continue to be for procedural reasons (such as not returning The post Advocacy News: March 2024 appeared first on Hemophilia Federation of America.

  • Update on Smithsonian Institution Project to Archive Bleeding Disorders History

    Hemophilia Federation of America announced, in April of 2019, a partnership with the Smithsonian Institution to document the history of the bleeding disorders community, with a focus on the tragic experiences with contaminated blood, and we’re pleased to announce the first phase of the project is complete.   HFA began an initiative to collect artifacts and The post Update on Smithsonian Institution Project to Archive Bleeding Disorders History appeared first on Hemophilia Federation of America.

  • Advocacy News: February 2024

    Word From Washington State of the States The post Advocacy News: February 2024 appeared first on Hemophilia Federation of America.

  • Scholarship Recipient: Michael Potanin

    2023 HFA Educational Scholarship Johns Hopkins University, Maryland I am honored to have been chosen as a recipient of the HFA Educational Scholarship. This recognition provides immense support to me as I pursue my education and career goals. As a hemophiliac who has personally experienced the challenges of living with a genetic disorder, I am The post Scholarship Recipient: Michael Potanin appeared first on Hemophilia Federation of America.

  • Scholarship Recipient: Porus Pavri

    2023 HFA Educational Scholarship Rutgers University, New Jersey As an individual with hemophilia, my journey has been shaped by both challenges and determination. These experiences have propelled me towards pursuing a business major and setting ambitious future goals. I believe that the intersection of my personal circumstances and academic aspirations is a unique space where The post Scholarship Recipient: Porus Pavri appeared first on Hemophilia Federation of America.