Questions to ask: Hemophilia and bleeding disorders

Diagnosis

• Do I (or does my child) have hemophilia A, hemophilia B, or another bleeding disorder?
• What is the factor level, and is it mild, moderate, or severe?
• What gene change was found, and what does it mean for inhibitor risk?
• Can we be seen at a hemophilia treatment center?
• Which family members should be tested, including women who may be carriers?
• As a possible carrier, what is my own factor level, and do I need a bleeding plan?
• Could this be von Willebrand disease instead?
• What signs of bleeding should we watch for at home?
• What should teachers, coaches, or caregivers know?
• Should we see a genetic counselor?

Before

• Do I need preventive treatment, or treatment only when I bleed?
• What are the pros and cons of factor, emicizumab, and newer rebalancing medicines for me?
• How often will I need treatment, and is it a shot or an IV infusion?
• Can I learn to give treatment at home? Who will train me or my caregiver?
• What is my plan if I have a bleed while on my preventive treatment?
• Which medicines must I never combine with my treatment?
• Am I a candidate for gene therapy now or in the future?
• How often will I be tested for inhibitors?
• How will treatment be covered by insurance, and who can help with costs?

During

• How many bleeds am I having, and is that acceptable?
• Is my treatment schedule right, or should we change products or timing?
• Do my joints show any damage, and should I see a physical therapist?
• How do I prepare for dental work or surgery?
• Which labs should I use, and what should I tell them about my medicine?
• Is my factor still working well, or should I be checked for an inhibitor?
• Which sports and activities are safe for me?
• What should I do about pain from my joints?
• Are there clinical trials I could join?

After

• If I had gene therapy, how often will my factor level and liver tests be checked?
• What would we do if my factor level from gene therapy drops?
• How can I protect my joints as I get older?
• How do I plan for pregnancy and delivery as a carrier or as a parent with hemophilia?
• What should I carry with me when I travel?
• Are there support groups or camps for people with hemophilia and their families?
• How often should I visit the hemophilia treatment center?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.