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.”
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.
I was diagnosed with Pulmonary Hypertension in 1998, but my story begins two years earlier. I gave birth to my youngest of three daughters in February of 1996. Immediately, I started feeling exhausted all the time. I would wake up in the morning, feed my children breakfast, sit them down in front of the television, and fall asleep on the couch. I’d wake up in time for lunch, fix them something quick, send them out to play, and fall asleep. At 5pm, I’d wake up, make dinner and wait for their father to come home, where I would hand him the children and say, I’m exhausted from my day, and fall asleep. This went on for nearly a year, until we moved to Texas.
I thought the sleeping was more depression, which I had been suffering with since age 5. When we moved to Texas, my two older girls were of kindergarten age and I sent them off to school. My youngest daughter and I would spend the day watching television and playing on the floor. During the summer after their kindergarten year, I began passing out. I didn’t tell anyone that I passed out because honestly, I thought I had fallen asleep. I thought I had woken up. But I would wake up on the floor, usually with my head throbbing, from hitting it some place.
The first time I passed out in front of someone, I was chasing my daughter around and I passed out in front of my sister and ex-mother in law. I woke up to paramedics around me taking my blood pressure, and who knows what else. I refused to go with them because I didn’t have insurance but promised to go to my doctor the next day.
I had been seeing this young, handsome doctor and for many months I kept telling him how tired I was, how I could feel and even see my heart beat, not to mention having to hear it at night when all was quiet. I told him how I was fainting. He gave me Prozac, and each time I would go in to see him, he’d up the dose. Until one day, a year later, I fainted in front of my younger sister. She ran and got my ex-husband who took me in to see my primary doctor.
Luckily, he wasn’t there so we saw his on-call doctor. He listened to my heart and actually listened to ME and said “This is not in your head. This is in your heart”. I remember that day so clearly. He sent me for an echo-cardiogram and the next day, I saw a cardiologist who gave me the news. It was a month later that I saw a specialist in Houston, Texas, Dr Adaani Frost, who, on September 6, 1998; after a Right Heart Catheterization, and waking up on meds, diagnosed me correctly with Primary Pulmonary Hypertension,
I will be celebrating my 14th year since diagnosis with a BANG! I found PHCentral.org first and then PHAssociation.org and right before my divorce was final, in 2008, I found Caring Voice Coalition, without whom, I probably wouldn’t be here, or else, I’d be in a horrible financial situation!
Thank you so much Caring Voice!!! You have been such fantastic help, not just monetarily, but emotionally as well. I don’t know what I would have done without you guys!!Posted in Diseases, Featured, How We Help, Media Center, Uncategorized | Tagged Depression, fainting, phcentral.org, Pulmonary Hypertension, Pulmonary Hypertension Association | Leave a comment May 9, 2012
The Pulmonary Hypertension Association’s motto is Empowered by hope, a brief summation that speaks volumes. It says that, while they do indeed help thousands of patients with Pulmonary Hypertension, thereby making them powerful, they are fueled by the hope that their patients exude. It is their patient community that motivates them to do what they’ve done for more than 20 years. Hope, through help.
PHA’s mission is to find methods to prevent and cure Pulmonary Hypertension (PH), and to also provide for the PH community through support, education, advocacy and awareness. An arduous undertaking, considering that there are currently upwards of 30,000 Americans living with PH today.
Our community is a huge tent for anyone affected by the disease.
Soon after Dorothy Olson was diagnosed with PH and given two years to live, she was discouraged yet determined. Inspiration paved way. She was connected with Teresa Knazik, a fellow PH patient. Letters were written, pen-pal groups were formed – an organization was shaped. And soon after Olson, Knazik, Pat Paton and Judy Simpson sat around a Florida kitchen table to share everything they knew about PH, the Pulmonary Hypertension Association was born.
“From our earliest days, PHA has provided opportunities for support and connection, patient (and now medical) education, and integration of medical professionals into our organization,” said Debbie Castro, Volunteer Service Director for the Pulmonary Hypertension Association, and Adrienne Dern, PHA Vice President.
What makes PHA so innovative, Castro and Dern said, is their ability to connect patients with caregivers and medical professionals alike. PHA currently hosts more than 235 support groups across the country, bringing people together to support a shared cause.
“Our community is a huge tent for anyone affected by the disease,” Castro and Dern said. “[PHA] creates a strategic alliance between the families affected by the disease and the medical professionals who treat them.”
Although PHA started out as a single support group, the internet has allowed them to broaden their scope. In addition to increasing the amount of services to its core constituencies, PHA has implanted a number of online communities to help them reach more people.
“We have numerous online communities,” Castro and Dern said. “Including e-mail groups, a message board, daily online chats, and our latest offering – PH E-mail Mentors, which enable patients and caregivers to find someone like themselves and engage in a one-on-one e-mail relationship.”
In 2009, PHA moved away from its “one size fits all” programming and developed targeted programs for specific patient groups, a shift that PHA said has significantly enhanced what they can offer to their patients.
Today, PHA, at the helm of President and CEO Rino Aldrighetti, prides themselves on bringing people together. Whether it’s through an online chat or a kitchen table discussion, PHA, as their website states, turns strangers into friends.
“We have stayed true to our roots,” Castro and Dern said. “[We’ve] continued – but not altered – the vision and ingenuity of our founders. Just as they did then, we work every day to end isolation and seek a cure for Pulmonary Hypertension. So while the scale and scope have greatly expanded, we continue to follow their lead.”Posted in Diseases, Featured, Media Center | Tagged Advice, Aid, Community, Help, Pulmonary Hypertension Association, Support | 2 Comments September 16, 2011
We found this article so incredibly helpful. From our friends at Pulmonary Hypertension Association:
As a caregiver for someone with pulmonary hypertension, you spend a good deal of your time thinking about someone else. When your day-to-day concerns are tied to someone else’s comfort, it’s possible to put your own physical and mental health on the back burner.
While you may feel as if you don’t have time to tend to your own needs, the truth is that the most effective and supportive caregivers are those who also take time for themselves. Read over the tips below to make sure you’re giving yourself the attention you deserve.
15 Tips to Help You Care for
Your Family Yourself