Top Toolbar



Throughout your child's life, you will have many opportunities to discuss your child's bleeding disorder with others. Telling people about your child's bleeding disorder can be daunting. You may be worried that you and your child will be treated differently once people know.

Helping Your Child With Disclosure

Be sure to include your child in this decision-making process. As children mature, they have an increased need for privacy, which may influence their decisions about telling peers. Some may choose to disclose to all their friends and classmates, while others may want to tell only a few people or no one at all. Some children want to be known for their talents and accomplishments, not just their bleeding disorder, while others will enjoy educating people on their disorder. At this age, either choice is appropriate.

Different people need different amounts of information. It’s important to inform the school, teacher, and coaches about your child’s bleeding disorder. A peer may just need to know that your child has a bleeding disorder and what it means. Help your child know that getting used to talking about their bleeding disorder with peers can help them feel more comfortable with themselves, their disorder, and their treatment.

It is helpful if friends and family members, neighbors, and caregivers know about your child's health condition. They can help you and your child cope with the ups and downs of living with a bleeding disorder. They can be a support system for your entire family in times of need.

Of course, different people will have different reactions to the information. Some may find your news perfectly normal. Others may be concerned and worried about your child's health and future. Unfortunately, some people may not react to the information as favorably as we would like. They might become upset and make unfair, biased, or hurtful remarks. Sometimes they stop contact with you and your child altogether.

These kinds of reactions can happen because many people know so little about bleeding disorders or blood-borne viruses (for example, what they are, how they’re transmitted, and how they can affect someone). This may stem from preconceived ideas or ignorance and prejudice. If this happens, remember, it’s not a reflection on you or your child, and you’re not responsible for their reaction.

Helping Your Child Prepare to Tell Others

  • Teach your child about their bleeding disorder. Be certain your child has accurate information before sharing it with others.
  • Help your child practice talking about having a bleeding disorder. A social worker or counselor at your Hemophilia Treatment Center (HTC) may have some pointers for you.
  • Think through all the possible responses a person might have when hearing that your child has a bleeding disorder. And think about how your child might react in turn. This will help you and your child figure out what other information might need to be shared.
  • Encourage your child to choose a good time and place to tell someone about the bleeding disorder. Having sufficient time to talk and being in a quiet place makes it easier to talk openly and safely.
For more information, go to Talking to Others About Bleeding Disorders.