Download Choose a building block. Hemophilia Awareness Month – Fast Facts

 Choose a building block.
Hemophilia Awareness Month – Fast Facts for Patients
Indiana
Hemophilia &
Thrombosis
Center, Inc.
Hemophilia is a rare inherited disorder that impairs the body’s ability to
control bleeding. People with hemophilia are missing one of the clotting
factor proteins in the blood that helps stop bleeding when an injury
occurs. There are three types of hemophilia: A, B and C. Hemophilia A is
caused by a deficiency in factor VIII (8); B due to a deficiency in factor
IX (9); and C due to a deficiency in factor XI (11). People with
hemophilia have either a mild, moderate or severe deficiency. In the
United States, approximately 400 babies are born each year with
hemophilia. To help you better understand the condition, the 10 most
commons myths about hemophilia are addressed below.
Myth 1: Individuals with hemophilia have a known family history of the
disorder.
 About one-third of babies born with hemophilia have the disorder
due to a new alteration (i.e. mutation) in the genes that can result
in hemophilia. This occurs in families without a history of the
condition.
 Because some people with hemophilia have a mild or moderate
deficiency, they may not experience bleeding symptoms;
therefore, some families are not aware of a history of hemophilia
in their family.
 The gene for hemophilia may be passed down through many
generations in the females before a male receives the gene and has
symptoms.
Myth 2: All people who have hemophilia are diagnosed at birth.
 Due to a lack of bleeding at birth or because the family does not
have a history of hemophilia, many people who have hemophilia
are not diagnosed as newborns.
 While people who have severe hemophilia are usually diagnosed
early in life; those with a mild or moderate disorder may not be
diagnosed until they experience an injury or undergo an invasive
procedure that causes bleeding. This may not occur until
adulthood.
 Some previously normal people can develop antibodies against
one of their own clotting factors. This is called acquired
hemophilia. People born without hemophilia may develop
hemophilia as this condition is not inherited.
8402 Harcourt Road
Suite 500
Indianapolis, Indiana 46260
Tel: 317-871-0000
Toll Free: 1-877-CLOTTER
Fax: 317-871-0010
www.ihtc.org
Myth 3: Hemophilia occurs only in Caucasians
 Hemophilia occurs in all races and ethnic groups equally.
 In the United States, the rates of hemophilia are similar in
Caucasian, African American, Asian and Hispanic males.
Myth 4: Only boys have hemophilia.
 Although rare, females can have hemophilia. This can happen if a
girl’s father has hemophilia and her mother is also a carrier of the
hemophilia gene. In addition, some females who are born with
one normal X chromosome and one abnormal X chromosome may
have hemophilia. This may occur if one of the X chromosomes
has the gene for hemophilia.
 Female carriers may have low levels of a clotting factor protein
and be at risk for mild bleeding symptoms. Very rarely, carriers
may have a moderate or severe deficiency.
Indiana’s Only Federally Recognized Comprehensive Hemophilia Center

Hemophilia caused by factor XI (11) deficiency affects males and
females equally.
Myth 5: People with hemophilia bleed faster and may experience severe
bleeding due to a minor cut.
 People with hemophilia do not bleed faster; they bleed longer due
to their inability to form a stable blood clot.
 Typically, minor bleeding is not life threatening or excessive.
Important exceptions do exist, such as bleeding in the mouth or
oral cavity, where it is often difficult to gauge the amount of blood
lost due to swallowing and saliva.
Myth 6: Individuals with hemophilia usually die young and are disabled.
 Most people who have hemophilia lead long, full and productive
lives.
 The average lifespan of a person with hemophilia is the 1960’s
was 11 years. With the introduction of home therapy and
advancements in therapies, those born today with hemophilia have
a normal life-expectancy.
 Since the initiation of preventative treatment in the mid-1990’s,
children who have hemophilia lead a life of less pain and
disability. In large part, this is due to the prevention of chronic
joint bleeding and associated permanent joint damage and
destruction.
Myth 7: Physical activity is not recommended for people who have
hemophilia.
 Regular exercise strengthens the muscles and joints, which
prevents injury. Exercise is very important to maintain a healthy
weight. Overweight patients with hemophilia often have a
decreased ability to move and experience increased injury due to
their weight.
 A list of sports that are encouraged for people who have
hemophilia can be found in Playing it Safe: Bleeding Disorders,
Sports and Exercise, a National Hemophilia Foundation
publication.
Myth 8: Everyone with hemophilia is infected with HIV or hepatitis C
spread through blood or blood-derived products.
 Unfortunately, in the 1980’s many patients that used clotting
factor concentrate for treatment of hemophilia became infected
with HIV (60-90% of those with hemophilia A; 30-50% of those
with hemophilia B) and/or hepatitis C (approximately 80% of all
people with hemophilia). These viruses were present in the blood
supply.
 Today, improved donor screening and advanced purification
methods have made the treatment of hemophilia very safe. In
addition, there are now products available that are genetically
engineered, meaning they are not derived from human blood.
 There has not been a documented case of HIV or hepatitis C
infection from use of replacement therapy for treatment of
hemophilia since 1987; meaning that the majority of hemophilia
patients today are not infected with HIV or hepatitis C.
Myth 9: Since people with hemophilia have thin blood they cannot have a
heart attack or stroke.
 Medical researchers are still investigating this issue. At this time,
more work remains to be done.


Importantly, the same factors that contribute to having a heart
attack or stroke in the general population also impact people who
have hemophilia (obesity, smoking, sedentary lifestyle).
Patients who have hemophilia are encouraged to lead a lifestyle
that contributes to a lower risk of cardiovascular diseases.
Myth 10: All physicians and medical facilities are prepared and equipped
to provide optimum care for hemophilia patients.
 Care from all providers is not equal.
 Receiving care at a federally recognized hemophilia treatment
center (HTC) has been shown to reduce the risk of death in a
person who has hemophilia by 40%, compared to those not seen
in a designated HTC.
 Hemophilia patients seen at an HTC are also 40% less likely to be
hospitalized for complications associated with bleeding.
 The Indiana Hemophilia and Thrombosis Center (IHTC) is the
only federally recognized HTC in Indiana.
More information about hemophilia care and treatment is available
through the National Hemophilia Foundation (1-800-424-2634) or from
Hemophilia of Indiana (1-317-396-0065).Visit the Indiana Hemophilia
and Thrombosis Center (IHTC) website (ihtc.org) for detailed
information about the center, including the comprehensive care team,
educational news, pharmacy and specialty clinics.