Coping as a family

Pulmonary hypertension is a life-changing experience for every member of the family. Ongoing adjustment to the "new normal" can be difficult for children with pulmonary hypertension, as well as their parents, siblings and other family members. But by facing pulmonary hypertension as a family and supporting one another along the way, your loved ones will be better equipped to cope with the changes it brings.

Read on for tips from professionals and other families coping with pulmonary hypertension.

For You

Coping as a Parent

Prioritizing your own emotional health after your child is diagnosed with PH can make you more capable of helping the rest of your family cope. Tend to your feelings and needs first

For Your Children

Helping Your Child with PH Cope

Whether your family has been living with PH for a few weeks or several years, it’s normal to have lots of questions about raising a child with a chronic illness. Learn how to help your child with PH cope

Helping Your 2- to 5-Year Old Cope During a Medical Crisis

A medical crisis can be a frightening experience for both you and your child who has PH. Get tips on helping your child stay calm and communicate clearly

Talk About PH with Your Children: A Parent's Perspective

Pam shares her experience helping her children cope with PH in their family. Read more

Helping Healthy Siblings Cope

PH can affect everyone in the family, including healthy children. Find ways to help healthy kids cope

Balancing Act: Parents Weigh in on Sibling Issues

It can be difficult to balance the needs of your child who has PH with the needs of their sibilings. Get tips from other parents

Parenting PH Kids & Siblings

Dawn Butler is the mom of 6-year-old PH patient Stella and 11-year-old Simon. Dawn is also the support group leader of the new Philadelphia Pediatric PH Support Group. PHA connected with Dawn recently to talk about how she balances the needs of a child with PH with the needs of a sibling and what she hopes to bring to her role as a support group leader. Read more

For You and Your Partner

Co-Parenting a Child with PH

When you're co-parenting a child with PH, communication can be critical. Learn how to encourage an open dialogue with your partner

Caring For Your Relationship

When life is the most hectic and stressful is when you are in the greatest need of your partner's affection and support. Keep your relationship strong with these tips

Talking About Your Child's PH: A Parent's Story

Dianna shares her experience helping her significant other understand their daughter's PH. Read about what worked for her


PHA's psycho-social resources for caregivers are made possible through support from from the Medtronic Foundation, Novartis Pharmaceuticals and the Jansen Family Foundation.


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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.