Community
Hemophilia Community
For people living with Hemophilia A and B, their families, and caregivers.
This information is for educational purposes only and is not medical advice. Always consult your healthcare provider about your specific condition and treatment.
When to seek help
Seek emergency care for a head injury, bleeding that will not stop, swelling in the neck or throat, or severe unexplained pain - do not wait.
If you are experiencing a medical emergency, contact your local emergency services immediately.
Overview
Hemophilia is an inherited bleeding disorder in which the blood does not clot properly because a clotting protein (factor) is missing or low. Bleeding lasts longer than normal.
Symptoms
- Bleeding that lasts longer than normal
- Joint bleeds - painful, swollen knees, elbows, or ankles
- Easy bruising
- Bleeding after surgery, dental work, or injury
Causes
Caused by a gene mutation that affects factor VIII (hemophilia A) or factor IX (hemophilia B). It is usually inherited; about 1 in 3 people has no family history.
Types
- Hemophilia A - missing factor VIII (most common)
- Hemophilia B - missing factor IX
- Severity is mild, moderate, or severe based on factor level
Diagnosis
Diagnosed with a blood test that measures clotting factor levels. Severe hemophilia is usually found in infancy; mild forms may appear later.
Treatment
Treatment replaces the missing factor by IV infusion, either regularly (prophylaxis) to prevent bleeds or on-demand when a bleed happens. Newer non-factor therapies are available for some people. A hemophilia treatment center (HTC) coordinates care.
Living with it
- Learn early signs of a bleed and treat promptly
- Stay active with low-impact exercise (swimming, cycling)
- Avoid high-contact sports without HTC guidance
- Carry a medical ID
- See your HTC at least once a year
Complications
- Joint damage from repeated bleeds (hemophilic arthropathy)
- Inhibitors - antibodies that make factor treatment less effective
- Serious internal or head bleeding (rare)
Frequently asked questions
What is an inhibitor?
An antibody your immune system makes against factor treatment, making it less effective. Immune tolerance induction (ITI) can help.
Join the Hemophilia Community community
Talk with people who understand, share what helps, and find support from others living with hemophilia community. Private, moderated, and free.
Posts in this community reflect personal experiences, not medical advice. Always talk to your doctor before changing your treatment.