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Telling Others About Your Child’s Bleeding Disorder

Tips for Preparing to Tell Others About Your Child’s Bleeding Disorder

  • Find out as much as you can about your child’s bleeding disorder before you tell others. This will help you to answer their questions about what the bleeding disorder means for your child’s health, as well as what it means for them
  • Have accurate information (for example, pamphlets, fact sheets) ready to give them. Be prepared to answer their questions. This often helps reassure people and corrects any misinformation
  • Practice what you want to say first. You can practice by going over it in your mind or by role-playing with a friend you trust. You might also talk with a social worker, counselor, or the Hemophilia Treatment Center (HTC) team for suggestions on how to get the conversation started
  • Think through all the possible reactions the person might have and how you might respond; think about their possible worries or concerns and what information you might need to provide
  • Identify a caregiver you can trust and discuss the importance of protecting the privacy of your child’s bleeding disorder. It might be helpful for the person you are telling to know who else knows
  • Choose the time and place to talk with others about your child’s bleeding disorder. Give yourselves enough time to speak openly, safely, and without interruption. Remember, the person may also need time to think about things on his or her own, so a follow-up conversation may be a good idea
  • No matter how they react to the information you provide, offer them the opportunity to talk to your healthcare team or to contact a helpline for more information. This might help them get answers to any other questions or concerns they have about taking care of your child
  • Give the person time to understand this new information about your child. The person may be very surprised; so give him or her as long as they need to absorb everything, including reading through and following up on the information you gave them