Hemophilia Patient Education

About Hemophilia:
  • Hemophilia is an inherited bleeding or coagulation disorder. Persons with hemophilia lack the ability to stop bleeding because of a low level or absence of specific proteins or "factors" in their blood.
    • There are several types of hemophilia but the most common are:
      • Hemophilia A: lack of factor VIII
      • Hemophilia B: lack of factor IX
      • Hemophilia can be mild, moderate or severe depending on the level of clotting factor
  • The most common symptom of hemophilia is excessive uncontrollable bleeding because of the low level or missing clotting factor in the blood.
    • Bleeding may occur even if there has been no injury.
      • Spontaneous bleeding most often occurs in the joints and in the head.
      • Most common joint bleeds occur in the ankles, knees and elbows.
Goals of Therapy:
  • Joint bleeds that are not treated promptly can lead to joint damage over time so it is important to treat bleeds immediately - infuse factor and first aid (rest, ice, compression and elevation).
  • Bleeding in the head is a more serious type of bleed and should be treated immediately.
    • Head bleeds can cause headaches, nausea, vomiting, sleepiness, confusion or loss of consciousness - if you experience these symptoms you should infuse factor immediately and notify your physician.
  • Preventing bleeds before they occur is the most beneficial.
    • Injury prevention -- no contact sports, use helmets and safety gear.
    • Adherence to the therapy regimen - infusing prophylaxis treatments as prescribed. It is important to infuse factor in the morning so factor levels peak during the active part of the day - not during the night while sleeping.
Important Tips:
  • MedfusionRx will contact you monthly for a refill reminder, but if on-hand supply of factor is 7 days or less, call to schedule a shipment immediately.
    • The pharmacy will obtain a monthly inventory of factor and supplies on-hand.
    • The pharmacy will not automatically ship factor or supplies - all shipments must be scheduled.
  • Most factor products must remain refrigerated (some products do not require refrigeration - verify with the pharmacist or coordinator if you are not sure). You will need adequate refrigerator storage for product.
  • Notify MedfusionRx immediately if you experience any type of adverse drug reaction.
  • It is important for you to keep a log of all your infusions and bleeds - the MedfusionRx Coordinator will ask you how many infusions and breakthrough bleeds you had for the previous month.
  • Available Educational Resources
    • MedfusionRx has a Training Resource Center with educational materials for:
      • Injury Prevention and Bleed Management
      • Reconstitution and Self Administration of Product
      • Manufacturer Specific Guidelines

    The information provided above is educational material and is not intended to be a substitute for medical advice. You should discuss the information and how it may be applicable to you with your healthcare provider. For MedfusionRx patients if you have any questions about your medication or the side effects, please see the contact us page for your pharmacy number. For more information on dosing, precautions, warnings, interactions and contraindications for a specific medication, please refer to the product information (prescribing information) provided with your medication.