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LIVING WITH PH

Pediatrics

Receiving a diagnosis of pulmonary hypertension (PH) for your child is life-altering.

Once the initial shock of having a child diagnosed with a disease that most have never heard of fades, parents are left with the reality of living with PH. Although significant changes in lifestyle are often necessary to accommodate PH, most children continue to lead happy and fulfilling lives. PH parents continue to raise their families and can find ways to make day-to-day tasks a little easier while caring for their child. 

As a parent or family member, the more information you have, the more equipped you will be to advocate for your child in a variety of situations. Explore these resources to learn more about some of the issues and challenges that are unique to children living with PH and how you can help your family to deal with life with PH.

"Navigating PH" Guide

"Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients" is a completely free resource specifically designed to provide individuals with pulmonary hypertension (PH) and their loved ones with guidance, assistance, and optimism in the initial stages following a PH diagnosis.

Connect with Others

Becoming a caregiver can be an isolating experience, but you don’t have to face it alone. Connecting with others is a great way to gain support from folks who understand what it means to live with pulmonary hypertension and can relate to what you’re going through.

School Resource Guide

Helping children with PH and their families navigate life at school.

Resources
  • Oral Medication Info-Sheets

  • MediKidz: 32-page full-colour comic book

  • Tips for staying active and preventing fatigue

Videos

Webinars and videos from the Pediatric Community and PH Experts.

Pediatrics Committee

The Pediatrics Committee is made up of parents, children and healthcare professionals whose goal is to help identify and develop resources and programs that support families and communities of children living with PH.

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