A guide for living with hemophilia through different life stages.

Building momentum: 10-15 years

The tween years and the start of self-reliance

By now, you've probably mastered the ins and outs of treating your child's hemophilia. Any transition can be tough, but as your child enters their tween years and begins to take a more active role in their hemophilia management, it's important to empower them. In this section, you'll find tools to do just that.

Preteens are generally capable of thinking logically and seeing the cause and effect of situations. They will be able to report when they have a bleed. They will begin to understand that certain activities are more likely to cause bleeds than others, and they can be encouraged to be cautious about those activities.

Taking ownership of hemophilia may feel isolating for your child, so be sure to remind them that there are many kids just like them.

Here are some ways to help tweens develop a healthy attitude toward living with hemophilia
  • Remind them that having hemophilia does not determine who they are or what they will become
  • Focus on their strengths and abilities, not on what they cannot do
  • Give them both clear and consistent rules and the freedom to develop their own interests and abilities
  • Encourage them to become involved with hobbies and activities, such as art or music
  • Let them learn different ways to resolve conflict

  

Telling a friend

Discussing hemophilia with friends is a major step for your child. Your child's peers are likely to be more receptive than you might imagine. Below you'll find tips on how to help your child discuss hemophilia with their peers.

  • Let your child know that most kids his or her age won't know what hemophilia is and to be patient when fielding the questions they are likely to have
  • Make sure that your child reinforces that, although he or she may have a disease that makes them bleed more than others, it does not make him or her "different"
  • The ability to communicate this idea of "normal" may be the most difficult for your child. They should make it clear to their peers that they can still play most games or non-contact activities, but must be prepared if something was to happen
  • Being upfront with friends and classmates about what activities he or she can and cannot participate in will cut down on potentially awkward situations later on

 

  

Prevention: Health tips for everybody

The easiest way to try to prevent bleeds and/or their consequences is to keep up basic good habits. You may already be practicing or encouraging some positive routines. Below are some simple tips that can help you or your child stay healthy and active.

Here is a helpful checklist of things you may want to consider for upcoming trips
  • Exercise at least 3 times a week or as advised by an orthopedist and physical therapist
  • Maintain an ideal body weight
  • Get a good night’s sleep as often as possible
  • Always wear a seat belt
  • Maintain an infusion log—track your infusions and bleeds; record the date, time, and reason for infusion, product name, lot number, and dosage. Do it all simply by downloading our HemMobile™ mobile app from iTunes or the Google Play store
  • Reorder factor therapy before it runs out
  • Keep factor available when you or your child are away from home, and be sure you have a backup plan for when you don't have factor on hand
  • Infuse before an activity that may put extra stress on the body
  • Always carry or wear a medical identifier
  • Carry a letter from your or your child’s health care provider stating the type and severity of hemophilia you or your child has and describing your or your child’s treatment needs

Check with your local HTC for more nutrition and health information.

Taking ownership of hemophilia may feel isolating for your child, so be sure to remind them that there are many kids just like them.

 

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