Top Toolbar




Some parents find it difficult to predict how siblings will cope with a brother or sister's bleeding disorder. Regardless of their reaction, spend time with them and provide age-appropriate information about their sibling's bleeding disorder. Setting aside time for talking can help children build coping skills and know that their feelings are acceptable.

If your family is having trouble talking with each other, the social worker at your Hemophilia Treatment Center (HTC) may be able to help.

When talking to a child about a sibling’s bleeding disorder be mindful of the child's developmental stage. All your children may not be able to understand the same explanation. Tailor what you say, and when you say it, to your child's age and specific questions.

When talking with your children ask if they have any questions. This will help you understand exactly what they want to know rather than offering more information than they are ready for.

Talking with your child gives you insight into how they are coping with various challenges. Using a few simple techniques to begin conversations will make your talks more meaningful and help you to determine if you need to step in or step back.

Special Concerns for the Sisters of Individuals With Hemophilia

When your daughter is old enough to understand, talk with her about how her brother’s bleeding disorder may affect her, including being a carrier. Answer any questions she might have.


Hemophilia carrier testing can provide valuable information for women and their families. Testing for clotting factor levels and carrier status can help women manage their own health, make informed reproductive decisions, and alert female relatives who may also be affected and want to be tested. Help your daughter understand the genetics of bleeding disorders and talk to her about getting tested. Let her know that being a carrier does not change who she is and her ability to someday have a family.


For more information, go to Hemophilia Carrier Testing, How Hemophilia Is Inherited, and Helping Your Daughter Cope With Being a Hemophilia Carrier

Strategies for Better Communication With Your Child

  • Talk to your child when in the car.
    • The time spent driving from one activity to another can be time spent discovering what’s going on in your child's life.
    • The back seat/front seat situation offers a level of comfort for kids. They don't have to look you in the eye or see you wince if they ask or say something you weren't really prepared to hear.
    • Driving lets you think through an answer and pause as you find your way around busy roads—and sensitive questions.
  • Use technology to text, email, or call your child.
    • Send a brief text to say, 'How are you?' or just a quick 'Hey, what's up?'
    • Email your child how proud you are of his or her recent achievement or send a card to let your child know you are thinking about him or her.
    • Tell your son or daughter that you’re always there to either shoot the breeze or have a serious talk.
  • Do an activity together.
    • Walk the family dog, play a game, or work on a project together.
    • Use kicking a ball around the backyard as an excuse to spend time with your child. Because the focus is on the game, your child will feel less pressure and may be more likely to open up and share what's on his or her mind.
  • Eat dinner as a family.
    • Asking your child about his or her day or a topic in the media may spark a conversation you may not have otherwise had.
    • Don't lecture. Rather, listen to your child's opinion and offer some of your own.
    • Not sure how to start? Try a simple check-in.
      • Ask each child about some part of his or her day.    
      • Try playing the joys and concerns game. Each child—and each adult—recalls one happy situation that occurred that day or something that he or she is concerned about.

Having Trouble Getting the Conversation Rolling?

Conversation starter tips:

  • Ask concrete questions first.
  • Ask open-ended questions.
  • Keep questions simple.
  • Keep questions specific.
  • Ask follow-up questions.
  • Pay attention to body language. Sometimes kids say one thing but their body language says something else.

Tips for helping siblings understand their brother’s or sister’s bleeding disorder:

  • Bring them to a Hemophilia Treatment Center (HTC) appointment.
    • This will help give them a better understanding of what kind of treatment their sibling needs.
  • Encourage them to ask questions and keep them informed!
    • Teach them about the bleeding disorder their brother or sister has, how it affects their sibling’s body, and how it makes their sibling feel.
    • Talk to your children about all the good and bad feelings they might have about their sibling’s bleeding disorder.
    • When their sibling has a bleed, reassure them that their brother or sister will be okay.
  • Get them involved in treatment.
    • If your child is interested in helping, give them a small task.
    • Younger siblings can help organize the treatment supplies, pick out fun adhesive bandages, or hold an ice pack.
    • Older siblings can help mix factor.
  • Bring siblings to local hemophilia chapter events, summer camps, or retreats.
    • Some chapters have programs specifically designed for siblings.
    • There are lots of camps where siblings get to join in on the fun and learn more about bleeding disorders. They will get to meet other brothers and sisters of kids with bleeding disorders, learn about their experiences, and share their own.

Here are some suggestions on what to say when talking with the siblings of a child with a bleeding disorder:

  • Recognize and acknowledge their feelings.
    • For example: You seem upset. You seem sad. You seem angry.
  • Validate their feelings.
    • For example: It's okay to feel that way. This has been hard on you, hasn't it?
  • Show empathy.
    • For example: I'm sorry. I'll bet that feels terrible. That must be hard for you.
  • Share your feelings, both positive and negative.
    • For example: I feel that way sometimes too.

Helping Siblings Explain a Bleeding Disorder to Others

Siblings may be asked about their brother's or sisters bleeding disorder by friends and classmates.

Here is a simple answer that a sibling might use:

My brother/sister [BROTHER'S/SISTER's NAME] has a bleeding disorder called [NAME OF THE DISORDER]. This means [HIS/HER] blood doesn't work right. When my [BROTHER/SISTER] gets bumps and bruises, it just takes a little longer for [HIM/HER] to heal.