People with pulmonary hypertension (PH) often feel isolated and alone. Their friends and family members will know almost nothing about their disease, and even their family doctor will probably have more questions than answers. So where can patients go for advice and support? In this highly connected world, help isn't far away. Here are three organizations that provide valuable services for people with pulmonary hypertension.

http://www.phassociation.org

Toll-free help line (days and evenings): 800/748-7274

Founded more than a decade ago by three women with pulmonary hypertension, the PHA could be a model for support organizations everywhere. Patients staff the help line; if you want to find someone who knows what you're going through, you won't have to look far. "I received about 25 calls yesterday, and 10 people ended the call by saying, 'Thank you, you really saved my life,'" says Pat Paton, one of the founders of PHA. "When I was diagnosed in 1987, it took me two years to find another patient to talk to."

The Web site offers detailed information on the disease, message boards, a free newsletter, a calendar of related events, and news updates. Visitors can also order educational material, including the PHA's well-received "Pulmonary Hypertension: A Patient's Survival Guide."

http://www.lungusa.org

Toll-free number: 800/LUNG-USA (800/586-4872)

If you need help finding a qualified physician or just want some basic tips for keeping your lungs healthy, the American Lung Association can be a valuable resource.

http://www.americanheart.org

Toll-free phone: 800/AHA-USA-1 (800/242-8721)

Like the American Lung Association, the American Heart Association is a large organization that supports patients with many diseases, including primary pulmonary hypertension. If you need to find a cardiologist or want more information about your heart and how to protect it, visit the AHA's website or give them a call.

http://www.nhlbi.nih.gov

Telephone: 301/592-8573

Part of the National Institutes of Health, the NHLBI has an extensive consumer-friendly section on pulmonary hypertension, which covers its symptoms, diagnosis, and treatment; it also includes a helpful glossary. A bonus is that you can search for clinical trials across the United States.

http://www.rarediseases.org

Toll-free phone: 800/999-6673

This site covers 1,150 rare diseases, including both primary and secondary hypertension and related disorders. Importantly, this advocacy group’s effort also includes breaking news and contact details about current investigational therapies for both conditions. You can also speak to an RN or a genetic counselor at 203-744-0100, or ask a question about caring for someone with a rare disease at RN@rarediseases.org.

First published October 27, 2003
Last updated October 29, 2007
Copyright © 2003 Consumer Health Interactive

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