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Hemophilia

Hemophilia2017-02-24T19:10:52+00:00

1.    Haemophilia

Haemophilia, also spelled hemophilia, is a mostly inherited genetic disorder that impairs the body’s ability to make blood clots, a process needed to stop bleeding. This results in people bleeding longer after an injury, easy bruising, and an increased risk of bleeding inside joints or the brain. Those with mild disease may only have symptoms after …

Haemophilia, also spelled hemophilia, is a mostly inherited genetic disorder that impairs the body’s ability to make blood clots, a process needed to stop bleeding. This results in people bleeding longer after an injury, easy bruising, and an increased risk of bleeding inside joints or the brain. Those with mild disease may only have symptoms after an accident or during surgery. Bleeding into a joint can result in permanent damage while bleeding in the brain can result in long term headaches, seizures, or a decreased level of consciousness. (Source: Wikipedia)

2.    AIDS 

(Acquired immunodeficiency syndrome) — A disease caused by the human immunodeficiency virus (HIV), which attacks the body’s immune system, making it more prone to certain infections and rare cancers.

3.    Anemia 

A condition in which the blood is deficient in red blood cells, in hemoglobin (the iron-carrying component) or in total volume from loss of blood.

4.    Annual Meeting 

NHF’s yearly educational conference for consumers, healthcare providers and industry representatives.

5.    Bethesda unit 

A laboratory measurement of an antibody, called an inhibitor. Values above 5 are considered high; the inhibitor is powerful and weakens the effect of clotting factor.

6.    Biopsy

A procedure in which samples of tissues, cells or fluid are removed for examination. Liver biopsies reveal the extent of damage from cirrhosis, or scarring.

7.    Biosimilars

New versions of existing drugs, created once the current patent expires.

8.    Bleeding disorders

Several chronic health conditions in which the body does not clot properly, resulting in excessive or lengthy bleeding.

9.    Breakthrough bleed

Bleeding between infusions of factor product.

10.    Campaign for Our Future

NHF fundraising campaign to advance its Access to Care Today, Achieve a Cure Tomorrow (ACT) program.

11.    Career Development Award

NHF research award for established investigators pursuing basic, preclinical or clinical research.

12.    Carrier

A person who has the gene for a condition, but does not necessarily display the symptoms.

13.    Asymptomatic Carrier

A person without symptoms of a condition.

14.    Symptomatic Carrier

A person who has low factor levels and displays bleeding symptoms.

15.    CDC

U.S. Centers for Disease Control and Prevention. It supports the HTC network. Through the UDC, it monitors blood safety and conducts research on the bleeding disorders community.

16.    Central Venous Access Device (CVAD)

A small, flexible tube placed in a vein for patients who need regular infusions.

17.    Chromosome

Structures in the cell’s nucleus that contain genetic information in the form of DNA.

18.    Cirrhosis

Deterioration of the liver from excessive scarring.

19.    Clotting Cascade

A series of steps that occur in the formation of a clot, involving the clotting proteins and other substances.

20.    Clotting Disorders

Conditions in which there is an increased tendency toward excessive clotting.

21.    Clotting Factors

Proteins in the blood that act in sequence to stop bleeding and form a clot.

22.    Coagulation

The process of forming a blood clot.

23.    Coagulation disorders

Several chronic health conditions in which the body does not clot properly, resulting in excessive or lengthy bleeding.

24.    Co-infection

Having two viral infections at the same time, particularly HIV and hepatitis C virus (HCV).

25.    Creutzfeldt-Jakob disease (CJD)

An incurable degenerative brain disease that is fatal. It is caused by a prion, a protein particle that causes infectious diseases of the nervous system.

26.    Variant Creutzfeldt-Jakob disease (vCJD)

The human form of CJD, or “mad cow disease.”

27.    Cryoprecipitate

A frozen form of concentrated plasma discovered by Dr. Judith Graham Pool in 1965.

28.    DDAVP

Desmopressin acetate, a synthetic hormone used to treat some patients with mild hemophilia or von Willebrand disease.

29.    Deep vein thrombosis (DVT)

A blood clot in a vein deep in the body, usually in the lower leg or thigh.

30.    Desmopressin acetate (also DDAVP or Stimate®)

A synthetic hormone used to treat some patients with mild hemophilia or von Willebrand disease.

31.    DNA (deoxyribonucleic acid)

The molecular basis of heredity. The order of the four bases that compose DNA—adenine, cytosine, guanine and thymine—provides information on cell activity.

32.    Do the 5!

The theme of NHF’s National Prevention Program. The five strategies encourage people to live longer, healthier lives.

33.    End-stage liver disease

Irreversible damage to the liver that can end in liver failure. It is caused by chronic cirrhosis.

34.    Factor assay

A lab test that determines the level of circulating factor in the body. The results are reported as a percentage of normal levels.

35.    Factor product

Treatment that is infused to replace the body’s missing clotting proteins. It is made from plasma or recombinant products.

36.    Factor deficiencies

Bleeding disorders identified by the missing clotting factor. They include factors I, II, V, VII, VIII, IX, X, XI, XII and XIII.

37.    Factor I deficiency

A rare bleeding disorder caused by deficient or defective fibrinogen.

38.    Factor II deficiency

An extremely rare bleeding disorder caused by a deficiency of prothrombin.

39.    Factor V deficiency

A rare bleeding disorder caused by a deficiency of factor V protein.

40.    Factor VII deficiency

The most common rare bleeding disorder, caused by a deficiency of factor VII protein. It is usually severe.

41.    Factor VIII deficiency

Also called hemophilia A.

42.    Factor IX deficiency

Also called hemophilia B.

43.    Factor X deficiency

A rare bleeding disorder caused by a deficiency of factor X protein, which activates enzymes that help form a clot.

44.    Factor XI deficiency

Also called hemophilia C.

45.    Factor XII deficiency

A rare bleeding disorder. Most people who have it do not experience bleeds.

46.    Factor XIII deficiency

The rarest bleeding disorder, caused by the deficiency of factor VIII protein, which stabilizes the clot.

47.    Fibrosis

The accumulation of tough, fibrous scar tissue in the liver. It is measured by stages or grades.

48.    First Step

NHF’s program for families of newly diagnosed children.

49.    Fresh frozen plasma

The liquid portion of the blood. It is used to treat bleeding in patients with rare factor deficiencies, such as factors II, V, VII, IX, X and XI.

50.    Gene

A sequence of DNA that occupies a specific location on a chromosome and determines a particular characteristic.

51.    Gene therapy

Replacing, manipulating or supplementing a dysfunctional gene with a functional one.

52.    Half-life

The time it takes for half the quantity of factor or factor product to be eliminated from blood plasma.

53.    HANDI

NHF’s information resource center. Specialists answer questions and provide information packets.

54.    Hemarthrosis

Bleeding into a joint.

55.    Hematologist

A physician specializing in disorders of the blood.

56.    Hemoglobin

The protein in red blood cells that contains iron and carries oxygen and carbon dioxide.

57.    Hemophilia

A bleeding disorder in which a clotting factor protein, such as factor VIII or IX, is completely or partially lacking or does not function normally.

58.    Hemophilia A

A deficiency or absence of factor VIII. The most common form of hemophilia, also called “classic hemophilia.”

59.    Hemophilia B

A deficiency or absence of factor IX. Also called “Christmas disease” after the first family diagnosed with the condition.

60.    Hemophilia C

Also called factor XI deficiency. Patients are deficient in or lack factor XI protein.

61.    Mild hemophilia

A factor VIII or IX level ranging from 5% up to 50% of normal blood levels.

62.    Moderate hemophilia

A factor VIII or IX level ranging from 1% up to 5% of normal blood levels.

63.    Severe hemophilia

A factor VIII or IX level below 1% of normal blood levels.

64.    Hemophilia treatment centers (HTCs)

A group of federally funded hospitals that specialize in treating patients with bleeding disorders.

65.    Hemophilia Walk

NHF’s nationwide event to raise funds and awareness of hemophilia and other bleeding disorders.

66.    Hemorrhage

Rapid, uncontrollable bleeding.

67.    Hemostasis

The process by which the body stops bleeding.

68.    Hepatitis

Inflammation of the liver. It can be caused by infection from several hepatitis viruses, including hepatitis A, B or C.

69.    Hepatitis A

Inflammation of the liver caused by the hepatitis A virus. There is a vaccine to prevent it.

70.    Hepatitis B

Inflammation of the liver caused by the hepatitis B virus. There is a vaccine to prevent it.

71.    Hepatitis C

Inflammation of the liver caused by the hepatitis C virus. There is no vaccine against it.

72.    Hereditary disease

A condition that is genetically passed down to offspring.

73.    HIV (human immunodeficiency virus)

The virus that causes AIDS.

74.    Infusion

Delivering clotting factor concentrate directly into a vein.

75.    Continuous infusion

Steadily infusing clotting factor concentrate; often used during surgery.

76.    Inheritance

The biological process of transmitting certain characteristics or conditions from parents to offspring.

77.    Inhibitor

An antibody to infused clotting factor concentrates, making standard treatments ineffective.

78.    Inhibitor Summit

NHF’s weekend educational conference for patients with inhibitors and their families.

79.    Intracranial hemorrhage

A bleed into the brain.

80.    Joint fusion

Surgery to combine one or more bones in a joint. Most commonly used in joints where replacement surgery is not recommended, such as the ankle.

81.    Joint replacement

Using artificial components in a joint, such as the knee or elbow, to replace those that are damaged from wear and tear or chronic bleeds.

82.    Lifetime cap

A spending limit on insurance benefits. Once it is reached, the policy no longer provides coverage.

83.    Medical and Scientific Advisory Council (MASAC)

NHF’s medical board that issues recommendations and advisories to the bleeding disorders community.

84.    Menorrhagia

Prolonged, heavy bleeding during menstruation. Can be a symptom of a bleeding disorder, such as VWD.

85.    Mutation

A change in the DNA of a cell, due to such causes as exposure to radiation or viruses, or during cell division. Hemophilia is caused by cell mutation.

86.    Spontaneous mutation

A genetic change that occurs without a triggering agent, usually due to a malfunctioning cell enzyme.

87.    National Hemophilia Foundation

A nonprofit organization founded in 1948 to serve the bleeding disorders community.

88.    NHF-Baxter Clinical Fellowship Program

A program created to increase the number of skilled clinicians providing comprehensive care for people with bleeding and clotting disorders.

89.    Nursing Excellence Fellowship

An NHF fellowship that provides support for registered nurses to conduct research or a clinical project.

90.    NYLI

NHF’s National Youth Leadership Institute for 18- to 25-year-olds to learn and use leadership skills.

91.    Parvovirus B19

An infectious virus that can potentially be transmitted through plasma-derived blood products.

92.    Pegylated interferon

A drug made from human proteins, called interferons, used to treat chronic hepatitis C. Usually paired with ribavirin.

93.    Physical Therapy Excellence Fellowship

An NHF fellowship created to improve delivery of physical therapy care and expand the knowledge base on hemophilia.

94.    Plasma

Yellow-colored, protein-rich portion of the blood, which carries the red blood cells, white blood cells and platelets.

95.    Platelets

Tiny platelike components of blood that help seal injured blood vessels and stop bleeding.

96.    Judith Graham Pool Postdoctoral Research Fellowships

NHF fellowships for candidates who have completed doctoral training.

97.    Port

A device that delivers intravenous drugs. It is usually implanted under the skin in the chest.

98.    Pre-existing condition

A health condition that existed prior to obtaining health insurance.

99.    Prophylaxis

A treatment regimen to prevent bleeds.

100.    Primary prophylaxis

Regularly scheduled factor product treatments to prevent bleeding episodes. Usually begun in childhood and performed two to three times weekly.

101.    Secondary prophylaxis

Regularly scheduled factor product treatments begun after a pattern of bleeding occurs or to treat a target joint.

102.    Recombinant product

Genetically engineered factor product made without human blood products, decreasing the risk of transmission of bloodborne infections.

103.    Ribavirin

An antiviral drug used with peg-interferon to treat chronic hepatitis C infection. It can have serious, severe side effects.

104.    Social Work Excellence Fellowship

NHF’s fellowship to support social work research.

105.    Standards of Care

State legislation to protect patient access to HTCs and the full range of products and services.

106.    Steps for Living

NHF’s online life stages educational curriculum for patients from birth through 25 years old.

107.    Sustained viral response

Indicator that hepatitis C virus has been cleared from the bloodstream.

108.    Synovitis

Inflammation of the synovial membrane, which surrounds joints. Can be caused by repeat bleeding into the same joint.

109.    Target joint

A joint that has had repeated bleeds, or at least four bleeds within a six-month period.

110.    Thrombophilia

Several distinct conditions in which there is an increased tendency toward excessive clotting.

111.    Thrombosis

The formation of a blood clot.

112.    Titer

A measure of the concentration of antibodies, called inhibitors, in the blood.

113.    UDC (Universal Data Collection Project)

A CDC program that monitors the safety of the US blood supply and the occurrence of joint complications.

114.    Von Willebrand disease (VWD)

A bleeding disorder in which von Willebrand factor (VWF), a blood protein, is either deficient or defective.

115.    Von Willebrand factor (VWF)

A blood protein that helps platelets plug injured blood vessel walls by causing them to stick together. It is also a carrier for factor VIII.

116.    Washington Days

NHF’s annual advocacy event on Capitol Hill.

117.    Acquired Platelet Function Defect

Acquired platelet function defects are conditions that prevent clotting elements in the blood called platelets from working as they should. The term acquired means these conditions are not present at birth.

118.    Congenital Platelet Function Defects

Congenital platelet function defects are problems with one of the blood elements needed for clots to form normally. These cells are called platelets. Congenital means present from birth.

119.   Congenital Protein C or S Deficiency

Congenital protein C or S deficiency is a lack of proteins C or S in the fluid part of the blood. The proteins are natural substances that help prevent blood clots.

120.   Disseminated Intravascular Coagulation (DIC)

Disseminated intravascular coagulation is a serious disorder in which the proteins that control blood clotting become overactive.

121.   Glanzmann Disease

Glanzmann disease is a rare disorder of blood platelets, which results in easy bruising and nosebleeds.

122.   Idiopathic thrombocytopenic purpura (ITP)

Idiopathic thrombocytopenic purpura (ITP) is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. People with the disease have too few platelets in the blood.

ITP is sometimes called immune thrombocytopenic purpura or simply, immune thrombocytopenia.