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Caregiver Support

PROMACTA

Caregiver Support

Life when your child has chronic ITP

If you’re the parent of a child with chronic ITP, it might be tempting to neglect your own needs. However, it is important that you keep yourself healthy. Your child and the rest of your family can only benefit.

Explaining chronic ITP to others1

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 daughter 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 daughter feels okay most of the time, but low platelet counts can make her tired."
  • "My son needs to avoid injury, so he cannot participate in certain activities."
  • "If she hits her head or gets in an accident, please call 911 and contact me immediately."

 

 

Consult with your doctor about what else you should share.

Tips for taking care of yourself2

  • Reach out to extended family to ask for help covering doctor visits or just to give you a day off
  • 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
  • Find things that you love to do and make time for them. Even small things can help
  • Take care of your own health: exercise, eat well, and make and keep doctor appointments for yourself as needed

Other sources of ITP support

Be sure to check out our PROMACTA Patient Support Program, which is designed to help people who have been prescribed PROMACTA® (eltrombopag), as well as their loved ones. Visit https://www.us.promacta.com/chronic-itp/patient-support/sign-up/ or call 1-844-PROMACTA to learn more.

 

Find other resources below:

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

 

Health Monitor’s guide for anyone living with ITP

 

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

References

1. Ponte M. ITP in children: steps to raise safe, happy kids. Guide2ITP website. http://guide2itp.com/raising-safe-healthy-children-itp. Published July 2011. Accessed September 15, 2017.

 

2. American Academy of Pediatrics. When things aren’t perfect: caring for yourself & your children. 

https://www.healthychildren.org/English/healthy-living/emotional-wellness/Building-Resilience/Pages/When-Things-Arent-Perfect-Caring-for-Yourself-Your-Children.aspx.  Accessed September 15, 2017.