Hemophilia C
My biggest frustration is the lack of knowledge that most medical professionals have about it. Whether it’s dentists or doctors or people in the ER, they look at you like you’re crazy - Josh Beck
image by: Factor It In - Factor XI Deficiency Hemophilia Walk Team
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Factor XI Deficiency Facts
Blame it on the Girl Scout cookie. That’s what Josh Beck, 27, of Franklin, Wisconsin, was eating when he was 14 years old and started hemorrhaging from the back of his throat. A week earlier he had undergone a routine tonsillectomy and adenoidectomy—his first surgery. “Everybody told me, ‘It’s a piece of cake, they do this type of surgery every day,’” he recalls. But his experience was far from a cakewalk. “During the 45-minute drive to the ER, I filled up half of a small garbage can with blood. I thought I was going to die,” Beck says.
Once at the hospital, the staff tried several different ways to stop the bleeding. Finally, the doctor soaked a cotton ball with an anticoagulant…
Resources
#PLAYITSMART
As a community we are capable of more than imaginable and instead of using hemophilia as an excuse for why we can’t, we should start to figure how we can. Through the #playitsmart initiative I want to highlight this attitude.
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The new FDA approval will allow 23andMe to tell consumers about their risk for 10 conditions. This won't tell a person whether they have a disease, but whether they are at risk of getting it.
Factor XI Deficiency Facts
Since FXI is not linked to the X chromosome, men and women have an equal chance of inheriting it from their carrier parents. “Factor XI deficiency is considered autosomal recessive, which means that unlike factor VIII or IX deficiency, you have to inherit it from both your parents.
Factor It In
"Factor It In" was first created as a campaign idea to raise awareness on Factor XI deficiency, AKA Hemophilia C. It is most common in Jews of Ashkenazi descent (~8-15% carriers, both sexes are affected), though the general population may be affected by it as well.
BabyMed
Unlike hemophilia, patients with Factor XI deficiency rarely bleed out spontaneously. The disorder is most commonly recognized after trauma or during surgery when clots do not form fast enough to stop bleeding effectively.
Hemophilia A, B & C: The Three Different Clotting Factor Deficiencies
Hemophilia C is also known as plasma thromboplastin antecedent (PTA) deficiency or Rosenthal syndrome. Like the other hemophilias, hemophilia C is associated with bleeding, but it differs from hemophilia A and B in several ways.
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