Uniting Behind the Zebra for Early Diagnosis of PH
by Mollie Katz, Vice President, Community Engagement, Pulmonary Hypertension Association.
Since last June, zebras have been the hot new symbol of pulmonary hypertension (PH).
PH patients, families and caregivers around the world have rallied behind the zebra,
building its stripes into their fundraising events, posting photos of themselves in zebra
clothing and talking about the zebra in media interviews about PH. At conferences of
PH-treating professionals, zebra-striped buttons are being given away and participants
are buzzing about “the zebra campaign.”
Why?
Among doctors, the zebra is a metaphor for an unexpected diagnosis. That’s why the Pulmonary Hypertension Association (PHA) has made it the symbol of a new 5-year initiative on the importance of considering a PH diagnosis early on. The campaign, Sometimes it’s PH, responds to a major problem — frequent misdiagnosis — by teaching health care professionals to suspect PH, screen for it and team with PH specialists to provide the best possible care.
The zebra image strikes physicians immediately, because it comes straight from
their medical education. When they first learn how to reach a diagnosis, they are
taught, “When you hear hoof beats, think horses, not zebras.” In other words, doctors
learn to assume that common symptoms suggest common diseases. But with a rare
disease like PH, widespread symptoms such as shortness of breath, chest pain, fainting
and fatigue point to a “medical zebra,” similar to a horse, but very different.
Sometimes it’s PH pairs the zebra with this message to medical professionals:
Sometimes shortness of breath, chest pain and other symptoms may lead you to
conclude it’s asthma, COPD, obesity or lack of fitness. But sometimes it’s not.
Sometimes it’s PH.
The campaign aims to eliminate misdiagnosis of this illness, whose symptoms are often mistaken for other diseases. Many patients are misdiagnosed repeatedly over several years. Research shows that almost 75 percent of patients have advanced PH by the time they are diagnosed. That number has scarcely changed since the 1980s. While continuing to work toward a cure, promoting early diagnosis is PHA’s next big priority for improving patient care.
Sometimes it’s PH, led by PH-treating professionals, will educate other professionals
about PH, starting with primary care providers, the first ones patients turn to with symptoms, and later reaching specialists and likely patients. PHA will highlight its own educational programs on early diagnosis; pursue new educational programs outside PHA; communicate through medical journals, media coverage, and more; and it will connect with other groups of medical professionals to carry the early diagnosis message to their members.
Already PHA has highlighted early diagnosis in the summer issue of its medical
journal, Advances in Pulmonary Hypertension; made it the theme of its successful
PH Awareness Month in November; and has offered a webinar for professionals and
patients on the subject during PH Week at the American Thoracic Society. (The journal
and webinar will be archived at www.PHAOnlineUniv.org, PHA’s hub for medical
education, if you’d like to catch it.)
Want to unite with others behind the zebra? Show you endorse the campaign at
www.SometimesitsPH.org. Share your own misdiagnosis stories and zebra photos
there. The site also lets you view a 1-minute video spot and gives tips on sharing it
through social media. Every step strengthens our cause.
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2 Responses to Uniting Behind the Zebra for Early Diagnosis of PH
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can you tell me where I can find a sometimes its a zebra tee shirt? I’m a ph lady. I’d like to help spread the word. I was diagnosed at the age of 51 by a VA doctor. I was also told they had little information to know the best way to treat me. They put me on oxygen and viagra. The Ann Arbor VA hooked me up with a specialist. I’m now being treated with more medications and doing really well. I sure would like to find a zebra message on a Tee shirt.
Hi Debbie,
Try contacting someone directly at the Pulmonary Hypertension Association. Check out their website http://www.phassociation.org/SometimesItsPH/ContactUs or call (301) 565-3004.
The CVC Team