Caregiver Support


If your child has immune thrombocytopenia (ITP), it’s natural to worry about them first and neglect your own needs. It’s important to stay healthy and positive.

People within your inner and outer circles might be curious about ITP symptoms and may ask a lot of questions. 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 ITP, which causes her to bruise and bleed easily”
Siblings, close friends, teachers, and 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”
  • “Your brother needs to take medication every day to stay healthy”
  • “If your brother or sister ever hits their head or gets into an accident, please call 911 and contact me immediately”
  • “Your brother or sister may get tired more easily than you—it’s important to always be kind and understanding”

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

  • 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

First, check out our PROMACTA Patient Support Program by clicking here.


For information on financial support programs, click here.


Other useful resources include:


Platelet Disorder Support Association

  • 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


Foundation for Women & Girls With Blood Disorders (FWGBD)

  • Helping to ensure that all women with blood disorders are correctly diagnosed and treated at every stage of life


ITP and Me

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

American Society of Hematology

  • 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 persistent or chronic ITP


National Heart, Lung, and Blood Institute (NHLBI)
  • NHLBI promotes the prevention and treatment of heart diseases, lung diseases, and blood diseases such as ITP


National Organization for Rare Disorders
  • 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