Hemophilia: what to know and what to do

Hemophilia is a hereditary bleeding disorder that makes it hard for blood to clot. That means cuts, bumps, or dental work can cause longer bleeding and painful joint bleeds. You don’t need to memorize every detail, but knowing the key signs and simple steps to take can stop small problems from turning urgent.

Diagnosis and treatments

If you suspect hemophilia, your doctor will start with blood tests: prolonged aPTT and a specific factor assay to measure factor VIII or IX. Women can be carriers and sometimes have low factor levels too — testing helps clarify risk for family members.

Treatment usually centers on replacing the missing clotting factor. That can be regular prophylactic infusions to prevent bleeds or on-demand treatment when bleeding starts. Newer options include subcutaneous drugs like emicizumab for many people with hemophilia A, which reduce bleeding without frequent IV infusions.

Inhibitors (antibodies) can develop against factor products in some patients. If that happens, treatment changes and you’ll work with a hemophilia treatment center (HTC) for personalized care. Gene therapy is an active area of research and has given lasting improvements in factor levels for some people. Ask your specialist if clinical trials or newly approved options might suit you.

Practical day-to-day care

Basic first aid helps a lot. For a bleeding cut, apply firm pressure, keep the limb elevated, and use ice to reduce swelling. Avoid NSAIDs like ibuprofen — they make bleeding worse. Acetaminophen is usually safer for pain, but check with your doctor.

Joint bleeds are common. If a joint swells or becomes painful, treat it as a bleed: rest, ice, compression, and elevation while contacting your HTC or treating physician. Early factor replacement prevents long-term joint damage.

Dental care needs planning: tell your dentist about hemophilia before procedures. Many dental procedures need factor coverage or local measures to control bleeding. Vaccinations, including hepatitis shots, are important if you receive blood products.

Exercise matters. Low-impact activities — swimming, walking, cycling — build muscle and protect joints. Skip contact sports or activities with high fall risk unless your care team clears them and you have proper protection and treatment plans.

Know when to seek emergency help: heavy bleeding that won’t stop after 20–30 minutes of pressure, head injury, blood in urine or stool, or sudden severe joint pain with swelling. Keep emergency contacts and your treatment plan handy. Hemophilia treatment centers offer care teams that include hematologists, nurses, and physiotherapists who know how to manage bleeds and long-term joint health.

Want reliable resources? Look up your nearest HTC, the World Federation of Hemophilia, or local patient groups for practical help and community support. With the right care plan, most people with hemophilia lead active, full lives. If you have questions about a specific treatment or your situation, contact your specialist — they can give advice that fits your needs.