bleeding disorders:
several chronic health conditions in which the body does not clot properly, resulting in excessive or lengthy bleeding.
breakthrough bleed:
bleeding between infusions of factor product.
carrier:
a person who has the gene for a condition, but does not necessarily display the symptoms.
clotting factors:
proteins in the blood that act in sequence to stop bleeding and form a clot.
factor product:
treatment that is infused to replace the body’s missing clotting proteins. It is made from plasma or recombinant products.
factor deficiencies:
bleeding disorders identified by the missing clotting factor. They include factors I, II, V, VII, VIII, IX, X, XI, XII and XIII.
factor I deficiency:
a rare bleeding disorder caused by deficient or defective fibrinogen.
factor II deficiency:
an extremely rare bleeding disorder caused by a deficiency of prothrombin.
factor V deficiency:
a rare bleeding disorder caused by a deficiency of factor V protein.
factor VII deficiency:
the most common rare bleeding disorder, caused by a deficiency of factor VII protein. It is usually severe.
factor VIII deficiency:
A deficiency or absence of factor VIII. The most common form of hemophilia, also called “classic hemophilia.” Also called hemophilia A
factor IX deficiency:
a deficiency or absence of factor IX. Also called “Christmas disease” after the first family diagnosed with the condition. Also called hemophilia B.
factor X deficiency:
a rare bleeding disorder caused by a deficiency of factor X protein, which activates enzymes that help form a clot.
factor XI deficiency:
also called hemophilia C.
factor XII deficiency:
a rare bleeding disorder. Most people who have it do not experience bleeds.
factor XIII deficiency:
the rarest bleeding disorder, caused by the deficiency of
factor VIII protein:
which stabilizes the clot.
half-life:
the time it takes for half the quantity of factor or factor product to be eliminated from blood plasma.
hemarthrosis:
bleeding into a joint.
hematologist:
a physician specializing in disorders of the blood.
mild hemophilia:
a factor VIII or IX level ranging from 5% to 40% of normal blood levels.
moderate hemophilia:
a factor VIII or IX level ranging from 1% to 5% of normal blood levels.
severe hemophilia:
a factor VIII or IX level below 1% of normal blood levels.
hemophilia treatment centers (HTCs):
a group of federally funded hospitals that specialize in treating patients with bleeding disorders.
Infusion:
delivering clotting factor concentrate directly into a vein.
inhibitor:
an antibody to infused clotting factor concentrates, making standard treatments ineffective.
intracranial hemorrhage:
a bleed into the brain.
lifetime cap:
a spending limit on insurance benefits. Once it is reached, the policy no longer provides coverage.
National Hemophilia Foundation:
a nonprofit organization founded in 1948 to serve the bleeding disorders community.
port:
a device that delivers intravenous drugs. It is usually implanted under the skin in the chest.
prophylaxis:
a treatment regimen to prevent bleeds.
recombinant product:
genetically engineered factor product made without human blood products, decreasing the risk of transmission of bloodborne infections.
target joint:
a joint that has had repeated bleeds, or at least four bleeds within a six-month period.
*hemophilia.org