Hemophilia

Women Can Have Hemophilia, Too

Hemophilia is an inherited
bleeding disorder primarily
affecting males—but females
can also have hemophilia.
Learn how hemophilia is
passed in families, and read
Shellye’s inspirational story
about her journey toward a
diagnosis and treatment plan
for hemophilia.

What is
hemophilia?
Hemophilia is a bleeding
disorder in which the blood
does not clot properly. It is
caused by a lack of clotting
factor proteins in the blood. As
a result, people with hemophilia may experience excessive and longer-than-usual bleeding after physical injury or trauma,
but they can also experience bleeding without injury or any obvious trigger. People with hemophilia can use
treatments called clotting factor concentrates (also known as “factor”) to replace the missing clotting factor proteins in
their blood to stop bleeding. This is typically done by injecting factor into a person’s vein. Often, the best choice for good,
quality medical care for people with hemophilia is from a comprehensive hemophilia treatment center (HTC). Find an HTC
near you.

What causes hemophilia?

Hemophilia is caused by a mutation (change) in one of the genes that provides instructions within cells for making clotting
factor proteins in the blood. This mutation results in hemophilia by preventing the clotting factor protein from working
properly or causing it to be missing altogether. These genes are located on the X chromosome. Males have one X and one
Y chromosome (XY) and females have two X chromosomes (XX). A male inherits his X chromosome from his mother and
his Y chromosome from his father. A females inherits one X chromosome from each parent. A male can have hemophilia if
he inherits an affected X chromosome (an X chromosome with a mutation in the gene that causes hemophilia) from his
mother.

Did You Know

 More than 2,700 women with hemophilia A or B are entered in Community Counts’ HTC Population Profile, a public
health monitoring program that gathers information about people with bleeding disorders who are cared for in
HTCs in the United States. These women account for approximately 11% of the total hemophilia population
receiving care at HTCs. Learn more about Community Counts.

Hemophilia can affect women, too

Females can also have hemophilia, but it is much rarer. When a female has hemophilia, both X chromosomes are affected
or one is affected and the other is missing or non-functioning. In these females, bleeding symptoms can be similar to
males with hemophilia. When a female has one affected X chromosome, she is a “carrier” of hemophilia. Being a female
carrier of hemophilia is not the same as having hemophilia, although female carriers may experience symptoms of
hemophilia. A female carrier can also pass the affected X chromosome on to her children.

Sometimes females with bleeding symptoms are not tested for hemophilia because there is often a misbelief that women
can’t have hemophilia but can only be carriers. Thus, women with hemophilia might not get an accurate diagnosis.
Although it is rarer for women to have hemophilia when compared to men, women can also have the condition. It is
important to raise awareness about this fact to help women with hemophilia receive the care and support they need to
live healthy lives.

Below, Shellye, a woman living with hemophilia, shares her story about the challenges she has faced living with this
condition.

Shellye’s Story
“Growing up, we understood that men had hemophilia and
women were “carriers.” Women passed along the X-linked
gene, but did not actually get hemophilia because (it was
believed) that the “good X chromosome” compensated for the
X chromosome that carried hemophilia. When women in our
family struggled with bleeding issues, hemophilia was not even
on the radar as a possible contributor or cause.”

Read Shellye’s full story about the challenges she faced living
with hemophilia »

Visit CDC’s hemophilia webpage to learn more.

Page last reviewed: March 18, 2019

Content source: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention