WHAT IS HEMOPHILIA?
Hemophilia is a rare and serious disease caused by an imbalance of hemostasis where missing clotting factor proteins can prevent stable blood clot formation, leading to excessive bleeding. In people with hemophilia, bleeds can happen during everyday activities, such as at work or school.
A MOSTLY INHERITED DISEASE
Hemophilia affects mostly men, although a percentage of cases occur in women. It’s usually inherited, and passed along through the X chromosome.
Women who have the hemophilia gene on one of their X chromosomes are considered “carriers” and can pass it along to their children. Women can also be affected and have symptoms.
In 30% of people with hemophilia, there is no family history of the disorder; it just appears as a new mutation of the gene.
HOW HEMOPHILIA IS INHERITED
= Has hemophilia
= Carrier for hemophilia gene
= No hemophilia
When father has hemophilia
Hemophilia is transmitted only through the X chromosome, but since male offspring always get their X chromosome from their mother, they can’t inherit it from their father. Yet female children have a 100% chance that they will be a carrier.
When mother is carrier
Since male offspring get their X chromosome from their mother, if she is a carrier, her sons have a 50% chance of getting hemophilia, while her daughters have a 50% chance that they will be a carrier.
HEMOPHILIA A & HEMOPHILIA B
The two most common types of hemophilia are hemophilia A and hemophilia B, with
hemophilia A affecting about four times as many as those with hemophilia B.
In people with hemophilia A, it’s clotting factor VIII that’s missing (or not working properly).
In people with hemophilia B, it’s clotting factor IX that’s missing (or not working properly).
FACTOR ACTIVITY LEVELS & WHY THEY MATTER
It’s your “factor activity level” (amount of clotting factor in your blood) that defines how protected you are and helps determine how much activity you may be able to sustain.
People in the near-normal to normal non-hemophilia range have factor levels above 40%. People with hemophilia have factor levels less than 40%. When levels drop below 40%, people with hemophilia are at an increased risk of bleeding, which impacts their lifestyles and outcomes.
Because there are differences between hemophilia A and B, treatment management and strategies should be different too. Talk to your doctor about managing your hemophilia.
Click through the chart below to see how your factor activity levels (for Mild, Moderate, and Severe hemophilia) can correlate to potentially safe activities.
Normal (Non-Hemophilia Range)
50%-150% factor activity
Near-Normal (Non-Hemophilia Range)
>40% to <50% factor activity
Factor levels between 40-50% are currently undefined by WFH guidelines
Mild Hemophilia
≥5% to ≤40% factor activity
Moderate Hemophilia
≥1% to 5% factor activity
Severe Hemophilia
<1% factor activity
Non-Hemophilia Range
Normal
50% to 150% factor activity
Lifestyle: Normal
Activity: Normal
High-impact activity possible with no pain
(sports, physical jobs, active days)
Surgery: Major surgery/trauma possible
Near-Normal >40% to <50%
Factor levels between 40-50% are currently undefined by WFH guidelines
Mild Hemophilia
>5% to <40% factor activity
Lifestyle: Minor Adjustments
Activity: Low to Moderate
Limited activity with some pain
(swimming, golfing, sailing) and risk
of spontaneous or micro bleeds
Surgery: Minor
(invasive procedures possible)
Moderate Hemophilia
>1% to 5% factor activity
Lifestyle: Significant Adjustments
Activity: Low to Moderate
Limited activity with some pain
(swimming, golfing, sailing) and risk
of spontaneous or micro bleeds
Surgery: Need for supplemental factor
Severe Hemophilia
<1% factor activity
Lifestyle: Vulnerable
Activity: Low to Sedentary
High risk of spontaneous bleeds with low
activity and pain with target joints
Surgery: Need for supplemental factor
As the chart above illustrates, your activity levels will vary depending on
how severe your hemophilia is.
CONTINUE ON TO LEARN ABOUT THE CLOTTING CASCADE
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MAT-US-2204622-v2.0-11/2022