Caregiver Support

PROMACTA

If your child has chronic immune thrombocytopenia (ITP), it's natural to worry about them first and neglect your own needs. It's important to stay healthy and positive because your child looks to you for guidance.

Explaining chronic ITP to others

People can be curious about chronic ITP symptoms and may ask a lot of questions. You and your child may find chronic ITP complicated to explain. For most people who interact with your child, it's easiest to keep things simple. For example, you might say:

  • "ITP is not contagious"
  • "My child has a bleeding disorder called chronic ITP, which causes her to bruise and bleed easily"

 

Close friends, teachers, and other caregivers can be given more of an idea about what to expect. For example:

  • "My child feels okay most of the time, but her condition can make her feel tired"
  • "To avoid injury, my child can't participate in certain activities"

 

Talk with your child's doctor about what else you should share.

Tips for taking care of yourself

  • Identify your circle of support. Talk to friends and family when you need to, or reach out to a psychologist or social worker to help get you through the hard times
  • Make time for things you love to do. Even small things can help
  • Take care of your own health: Remember to exercise and eat well
  • Reach out to extended family to ask for help covering doctor visits or just to give you a day off

Organizations that offer ITP support

Find other resources below:

Furthering the understanding, diagnosis, treatment, and prevention of certain blood and bone disorders 

 

A site run by the American Society of Pediatrics. The chronic condition section might be especially useful for parents of children with chronic ITP

 

NHLBI promotes the prevention and treatment of heart diseases, lung diseases, and blood diseases such as ITP

 

A helpful resource for ITP education, advocacy, research, and support. This site can help you find ITP experts or hematology centers of excellence near you

 

Providing a unified voice for those with rare diseases and their caregivers, seeking to help them so they won’t have to fight that battle alone

 

Provides patients with ITP with medical support as well as emotional, lifestyle, and daily ITP guidance