Patient Guide
Patient Education
Essential information about bleeding disorders, diagnosis, treatment options, and self-care guidance.
about Hemophilia
- Hemophilia is a genetic bleeding disorder in which the blood does not clot properly due to deficiency of clotting factors.
- Because the blood cannot clot normally, bleeding lasts longer after injury, surgery or trauma.
- Around 70% of cases are inherited, while about 30% occur due to spontaneous genetic mutation.
types
- Hemophilia A – Factor VIII deficiency
- Hemophilia B – Factor IX deficiency
who Is Affected
- Hemophilia mainly affects males because the gene is carried on the X chromosome.
- Females usually do not have severe hemophilia but may be carriers.
- Carrier females can pass the gene to their children.
- Some carrier females may experience mild symptoms such as heavy menstrual bleeding, prolonged bleeding after surgery or childbirth.
global Facts
- Hemophilia occurs in approximately 1 in 5,000 live male births.
- In Pakistan, around 10,000–15,000 people are living with hemophilia.
overview
- Hemophilia A is caused by deficiency or absence of clotting Factor VIII.
- It is the most common type of hemophilia and is four times more common than Hemophilia B.
severity Levels
- Mild (6–49%) – Bleeding usually after injury, surgery or dental work.
- Moderate (1–5%) – Bleeding after minor injuries and occasional spontaneous bleeding.
- Severe (<1%) – Frequent spontaneous bleeding, especially into joints and muscles.
symptoms
- Prolonged bleeding from cuts
- Frequent joint and muscle bleeding
- Easy bruising
- Bleeding after surgery or dental procedures
treatment
- Factor VIII replacement therapy
- Prophylactic treatment for severe cases
- DDAVP for mild cases
- Antifibrinolytic medicines
overview
- Hemophilia B is caused by deficiency of clotting Factor IX.
- It is inherited in the same X-linked pattern as Hemophilia A but is less common.
severity Levels
- Mild (6–49%)
- Moderate (1–5%)
- Severe (<1%)
symptoms
- Prolonged bleeding
- Joint bleeding
- Muscle bleeding
- Spontaneous bleeding in severe cases
treatment
- Factor IX replacement therapy
- Routine prophylaxis
- Antifibrinolytic medicines for dental and minor bleeding
overview
- Von Willebrand Disease (VWD) is the most common inherited bleeding disorder caused by deficiency or dysfunction of von Willebrand factor.
- It affects both males and females equally.
types
- Type 1 – Mild partial deficiency (most common)
- Type 2 – Functional defect of VWF
- Type 3 – Severe deficiency with serious bleeding
symptoms
- Frequent nosebleeds
- Easy bruising
- Heavy menstrual bleeding
- Excessive bleeding after surgery or injury
treatment
- DDAVP (Desmopressin)
- VWF concentrate therapy
- Tranexamic or Aminocaproic acid
tests
- PT and APTT tests
- Clotting factor level tests
- Factor assay to determine type and severity
medical Evaluation
- Detailed medical and family history
- Evaluation at a Hemophilia Treatment Center (HTC)
importance
- Living with hemophilia affects emotional, social and psychological well-being.
- Patients may experience anxiety, fear of injury and social limitations.
support Services
- Psychological counseling
- Family education and support
- School and workplace awareness
- Peer support groups and community programs
goals
- Improve quality of life
- Encourage treatment adherence
- Promote independence and confidence
dos
- Use cold compress for swelling during first 24–48 hours
- Maintain good dental hygiene using a soft brush
- Use paracetamol for pain
- Attend regular medical checkups
donts
- Avoid aspirin
- Avoid contact sports like football
- Avoid intramuscular injections
- Avoid hot compress during swelling
physiotherapy
- Physiotherapy helps strengthen muscles and joints
- Reduces risk of future bleeding episodes
dangerous Bleeding Areas
- Head injury
- Neck or throat bleeding
- Internal abdominal bleeding
- Severe joint swelling or pain
first Aid
- Apply pressure to bleeding area
- Use ice pack for swelling
- Contact nearest hemophilia center immediately
Need more help?
Contact the nearest hemophilia treatment center.