Things to do to Prevent Problems from a Bleeding Disorder

This list tells you the minimum things to do. You may want to do them more often or as your doctor suggests. Your Hemophilia Treatment Center can help with these: 

• A check-up (physical exam) every year.
• A check-up of your joints, bones, and muscles every year.
• Physical therapy (PT) check-up every year.
• Dentist visit every six months to a year.
• Blood tests as often as your doctor suggests:
  • Factor level check as needed
  • For Hemophilia diagnosis, check for inhibitors (at least every year)
  • Liver tests
  • Factor level check as needed
  • For Hemophilia diagnosis, check for inhibitors (at least every year)
  •  Liver tests
  • Complete blood count
  •  Immune system check
  • Iron studies as needed
  • Hepatitis A check (if negative, get the shot)
  • Hepatitis B check (if negative, get the shot)
  •  Hepatitis C check
• X-rays of your joints as needed.
• Meet with social worker to talk about financial and emotional needs every year.
• Talk to a genetic counselor about the chances of your children and grandchildren having a bleeding disorder or being carriers (do this at least once and then as needed).
• Education about your bleeding disorder every year and as needed:
  • Basic facts.
  • Family guidance.
  • Treatment and medicines.
  • Taking factor at home, if needed.
  • Joint (orthopedic) care.
  • Taking care of your teeth.
  • How we grow and mature.
  • HIV and hepatitis information.
  • Genetic issues.
  • Financial planning.
  • Progress in bleeding disorder research. Make sure your local doctor and emergency room are well informed about the proper treatment for your bleeding disorder.
  • Carry a recent letter from your doctor that tells what kind of bleeding disorder you have and how it is treated. This is really important when you are traveling.
  • Make sure your school or the people at your job know how to handle an emergency.
  • Make sure you have up to date phone numbers for your HTC nurse, clinic, on-call numbers for nights and weekends and know when to call. 

These are things you can do on your own

• Always treat your bleeding quickly.  People with hemophilia should take factor right away.
• People with hemophilia should take factor before doing an activity likely to cause a bleed.
• Exercise at least three times a week.  Follow the advice of your joint doctor (orthopedist) and physical therapist (PT).
• Brush and floss your teeth at least once a day. Eat regular, healthy meals.
• Try to stay near your ideal body weight.
• Get a good night's sleep.
• Always wear your seat belt.
• Wear appropriate protective gear for activities (i.e., bike helmet).
• Take all the shots (immunizations) that you need and keep them updated. 
• Check with your HTC before you start taking a new medicine or any herbal remedies. 
• Keep treatment calendars that show the day and reason you treated with factor or medication taken, the name of the medication, the dosage, and, for factor concentrate, the lot number. Send copies to your HTC. 
• Reorder factor or other medication before you run out.
• If you get factor concentrate in the emergency room, make sure the hospital always has some or bring it with you if you keep some at home.
• Always wear a MedicAlert® tag.
• Practice safe sex. Talk with your doctor about reproductive health questions or concerns, including ways to prevent unplanned pregnancies and sexually transmitted infections. 
• For women, keep track of your periods, including how many days long they are, how often they are happening, what products you use (including the size of products), and how often you are changing them. Also keep track of any passing of blood clots larger than 1-inch. Discuss with your doctor when you are planning to become pregnant. 
• Clean up blood with bleach. 
• Know what your health insurance covers.
• Get to know other families with bleeding disorders.