Parents Guide

'Curtis & Jerry on Mount Omega, Adventures with Hemophilia'

It is tempting to focus on the things that a bleeding disorder can keep your child from doing, as though it were a disability such thinking can itself become disabling to a child. He will only come to view his bleeding disorder as a disability if you do. In order to ensure that your child develops and matures normally, he must be allowed to explore the world and make mistakes just as any child would do. Trust and communication ensure that he receives both proper treatment and adequate freedom to grow.

You can begin to talk with your child about his bleeding disorder at a young age. It is just as important to listen to his experiences as it is to teach him about his disorder. A child who is naturally shy may find it more difficult to ask for help. A child may feel anxious that he will be punished for "causing" a bleed, although it may well be spontaneous, and be reluctant to report it. Children who have bleeds less frequently, especially children on prophylactic treatment , often do not recognize a bleed as quickly, or may feel that treatment isn't necessary. Open communication can help both you and your child to recognize and properly treat a bleed early and effectively.

To Get Started in talking with your child, here are some questions for discussion:

• Why do you think Curtis felt uncomfortable when Jerry saw him getting his infusion?

• What do you say if your friends have questions about your bleeding disorder ?

• What things do Curtis and Jerry do to stay healthy? What things can you do to stay healthy ?

• What did Curtis do when he realized that he had a bleed ?
  What should you do if you think you have a bleed ? Why?