Unless they happened to catch a re-run episode of ER, most people have never heard of primary pulmonary hypertension (PPH). Those who did see the episode probably have a one-sided, unrealistic view of the disease -- while real-life patients often lead long and essentially normal lives, the young character found that she had little time left. If you've been diagnosed with the disease, you'll have to become an educator as well as a patient.

Helping friends and family members understand pulmonary hypertension is the key to getting support, according to Pat Paton, a 67-year-old resident of Indiantown, Florida, who has lived with PPH since 1987. People need to understand your condition, your physical limitations, and, most of all, your prognosis. The best person to explain your situation to them clearly is you. If the people around you try searching for information on their own, their search can easily leave them more confused than ever. "There's a lot of bad information out there," says Paton, a founder of the Pulmonary Hypertension Association, where she now works as a help-line staffer. "We hear from people who found things on the Internet telling them that they only have six months left to live."

Pulmonary hypertension can cause many misunderstandings. For one thing, patients usually don't look sick. In fact, they appear so healthy that they often get glares when they use handicapped parking spaces. Friends and family members should be prepared to stand up for you, and they must understand that you can't lift heavy objects or overexert yourself, no matter how well you look, Paton says.

Another common misperception about pulmonary hypertension is that it makes it impossible for a person to work. For this reason, people with the disease may want to think about who really needs to know about it, Paton says. Family members, close friends, and doctors, yes. Employers, maybe not. As long as a job isn't strenuous, there's no reason why a person with pulmonary hypertension couldn't do it as well as anyone else.

Patients who need to spread the word about the disease have several excellent resources to turn to. The Pulmonary Hypertension Association offers many informative brochures and fact sheets on its Web site, http://www.phassociation.org . Anyone who wants more information -- friends and family members included -- can also call the PHA help line at 800/748-7274. The person at the other end of the line -- often Paton herself -- can field all sorts of questions about the disease.

The people around you may not know much about pulmonary hypertension, but they'll be eager to learn. With your guidance, they can understand the disease and help you get on with your life.

-- Chris Woolston, MS, is a health and medical writer with a master's degree in biology. He is a contributing editor at Consumer Health Interactive and was a staff writer at Hippocrates, a magazine for physicians. His reporting on occupational health earned him an award from the Northern California chapter of the Society of Professional Journalists.

References

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

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