Talking with Your Doctor

Did you know that a little knowledge can go a long way to help you feel in control of your situation?

Well, it can. And the best source of information is your doctor.3

Discussing Hemophilia with Inhibitors3,6

If you or your child has been diagnosed with an inhibitor, it is important that you take an active role by working with your treatment team and asking questions of them.

But, sometimes when you're there in the office, it can be hard to think of the right questions to ask.

You can get started by asking the following questions during the next appointment with your doctor, nurse, or hemophilia care team.

Never be afraid to voice your concerns or ask questions. That's why your hemophilia care team is there — to answer them.

The Right Kinds of Questions to Ask

If you have any questions about bleeds, treatment, physical activities, or managing inhibitors, be sure to write them down ahead of time. Then, bring them with you to your appointment so you don't forget to ask.3,6

Here are some examples of the right kinds of questions to ask:

Bleeds

  • How do I know if a bleed is happening?
  • How long should it take for the bleed to stop?
  • How do I know if my treatment is working?
  • What should I do if my therapy doesn't work?
  • When should I call my hemophilia care team?
  • What is the best way to contact my hemophilia care team?
  • How long should I wait to call my hemophilia care team if the first treatment does not work?
  • How do I know if there is an emergency and what should I do?

Treatment

  • How often should I see my hemophilia care team?
  • How will my health or my child's health be watched over time?
  • Should we talk about treatment options?
  • What dose should I be taking?
  • How often should my treatment be taken?
  • What are the possible side effects of my treatment?
  • What are the venous access options?
  • What should I consider when choosing one venous access versus another?
  • What is a target joint and how should I treat it?
  • What are the signs of joint damage?

Physical Activity and Lifestyle

  • What can I do to keep bleeds from happening?
  • What can I do to live as normally as possible?
  • How can I keep my joints as healthy as possible?
  • Which activities are safe for me or my loved one to do?
  • Which activities should I avoid?
  • Who should know that my child has hemophilia and inhibitors?
If you are discussing surgery as a possible treatment, you might also want to ask about:
  • Length of hospital stay
  • Recovery time
  • Physical therapy (Is it needed? Would it take place in the hospital, at home, or at your hemophilia treatment center? How long would it be needed?)
  • Limits to any regular daily activity
  • Need for any special equipment (anything from crutches to medical equipment for the home)
  • What are the possible benefits for me?
  • What are the risks?

Remember, building a relationship with your care team is important. They are there to help you with all of your questions.