LIVING WITH PH

“She asked, ‘You women go through all of this every day?’ and we said, ‘Yes, we do. We do and we have no choice because we want to live.’”
—PH patient Diane Ramirez,
on former U.S. Senator Elizabeth Dole’s reaction to medicating for PH


Mother with PH patient childWhile it can be difficult to imagine in the days and months following diagnosis, many patients develop strategies to cope with the physical and emotional aspects of living with PH and lead happy, fulfilling lives. With a bit of patience, planning, and flexibility, many people affected by PH find ways to work, travel, exercise, and do the things they loved before they were diagnosed.

Today, people diagnosed with PH can benefit from the experience of thousands of other patients who have learned to effectively manage this illness. Explore this section to find tips, tools and resources to help you adapt to life with PH.

Empowered Patient Online Toolkit

Download PH-specific templates and checklists to create your own personalized medical binder.

Day-to-Day Living

Simplify your daily routine with these tips from longterm survivors.

Coping with PH

Identify strategies for coping with the emotional and social aspects of PH.

Health and Medication Management

Manage your medications and coordinate your healthcare.

Emergency Situations

Take the time to prepare for emergencies before they happen.

Give your Caregiver a Shout-out
The "Caregiver Shout-Out" honors family members and friends in the PH community who provide patients with daily encouragement and support.

Working with PH

Make and keep a place for yourself in the workforce by listening to your body and knowing your rights.

Diet and Nutrition

Keep your diet on track with advice from PH experts.

Exercise and PH

Get active without overexerting your body.

Traveling with PH

Plan ahead for safe and comfortable travel with PH by car, plane or train.

Climate and PH

Prepare for changes in weather and altitude.

Ask a Question!

PHA Classroom

man sitting at a computer

Visit the Living with PH section of the PHA Classroom to learn more about topics like Staying Active with PH, Nutrition and PH, Healthcare Management, Coping with PH and more.

Watch recordings

PH COMMUNITY

Connect and share your experiences with PH with people around the world. Connect online or with a support group near you.

Connect with other PHers

Our Journeys

Ellen Smith


Read and listen to the stories of other patients' journeys living with PH and share your own story.

Read and share Journeys stories

Patient's Survival Guide

Looking for more information?

Patients Survival Guide Cover

Pulmonary Hypertension: A Patient's Survival Guide is the most comprehensive patient resource on pulmonary hypertension.

Learn more & order your guide today!

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.

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NORD

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.