Hemophilia is a genetic bleeding disorder that makes blood slow to clot. Most people have either hemophilia A (low factor VIII) or hemophilia B (low factor IX). Severity depends on how low the clotting factor is: severe is usually under 1%, moderate 1–5%, and mild 5–40%. Knowing your type and level changes what care you need, so keep that info handy.
Stay calm and act fast. For joint or muscle bleeds: rest the limb, apply gentle pressure and an ice pack to reduce swelling, and elevate if possible. Hold direct pressure on cuts for 10–15 minutes without checking constantly. If you have replacement factor at home, give it per your care plan or contact your hemophilia treatment center (HTC). Head injuries, deep cuts, worsening joint pain, or bleeding that won’t stop need emergency care—tell staff you have hemophilia so they can give IV factor and avoid certain treatments that make bleeding worse.
Many people use regular prophylactic factor replacement to prevent bleeds, while others get treatment only when bleeding starts. Newer non-factor drugs and gene therapies exist for some patients — ask your hematologist if you qualify. Avoid aspirin and NSAIDs like ibuprofen unless your doctor approves alternatives for pain. Wear a medical ID and keep a treatment card with your factor type and dose instructions.
Plan ahead for dental work, surgeries, travel, and sports. Talk with your HTC before any dental procedure or operation—small procedures often need a short course of factor cover. For travel, pack extra factor, syringes, cold packs, and a letter from your doctor. Low-contact exercise such as swimming, biking, and walking strengthens muscles that protect joints. High-impact sports raise bleeding risk, so find safe ways to stay active that fit your severity level.
Diagnosis comes from blood tests that measure clotting factor levels and sometimes genetic testing. If you’re a woman in a carrier family, ask about carrier testing and genetic counseling before pregnancy. Care teams usually include a hematologist, physiotherapist, nurse specialist, and social worker—comprehensive care centers improve outcomes.
Support matters. Patient groups like national hemophilia foundations and the World Federation of Hemophilia offer education, financial help resources, and community. Use them to learn about treatment access, clinical trials, and new therapies.
If you have questions about bleeding, a new symptom, or treatment options, call your hemophilia team. Quick action, a clear plan, and the right support make living with hemophilia safer and more manageable.
