Tampa Bay Survivors of Rare, Deadly Disease Work with Pulmonary Hypertension Association to Give Hope through Awareness and Support

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The free "PHA on the Road: PH Patients and Families Education Forum" Takes Place in Tampa Nov. 19, During Pulmonary Hypertension Awareness Month.

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“My goal is for people to be just as aware about PH as they are about breast cancer."

Tampa’s Carolyn Sheehy and Jodi Hamel know firsthand that awareness is a matter of life or death for people fighting pulmonary hypertension (PH). Survivors of the rare, progressive and often misdiagnosed life-threatening illness, the two Tampa Bay area women are urging anyone affected by the disease or disorders associated with PH to attend PHA on the Road: PH Patients and Families Education Forum. The free, day-long program takes place from 8 a.m. to 3 p.m., Saturday, Nov. 19, at Tampa Marriott Waterside Hotel & Marina.

PH, or high blood pressure of the lungs, can result from the tiny arteries in the lungs becoming damaged, narrowed, stiff or blocked. The increased pressure in the lungs forces the right side of the heart to pump harder to move blood through the arteries. This can lead to heart failure and death. While in some cases, there’s no known cause for PH, the disease can be associated with other conditions such as scleroderma, lupus and other connective tissue diseases; congenital heart disease; chronic liver disease; HIV; congestive heart failure; COPD; and other conditions. Since symptoms of the disease are often non-specific and include shortness of breath, fatigue and chest pain, PH is often misdiagnosed as asthma or other less threatening illnesses.

With little public awareness about PH, too many PH sufferers go months, sometimes years, before learning they have the deadly, debilitating disease. But with early and accurate diagnosis, PH treatments can extend and improve the quality of life for many who are diagnosed. PH can also be caused by blood clots in the lungs – a condition called Chronic Thromboembolic Pulmonary Hypertension or CTEPH, which unlike other forms of PH where there is no cure, can sometimes be reversed with a surgery called PTE to remove the blood clots blocking the blood vessels in the lungs.

Hamel, 50, learned of her diagnosis six years ago and had it confirmed with a right heart catheterization just months after experiencing symptoms. At that time, her pulmonologist, Mark Rumbak, M.D., from the University of South Florida, Morsani College of Medicine, also told her about the Pulmonary Hypertension Association (PHA)’s Tampa Bay patient and caregiver support group. Dr. Rumbak is one of the featured speakers at the PHA On the Road forum.

Sheehy, 64, began experiencing symptoms more than a decade ago. She believed that she had asthma, COPD and a number of other misdiagnoses before she saw a PH specialist who diagnosed her correctly four years ago and put her on a combination of two of the 14 FDA-approved targeted therapies available today. Following her diagnosis, Sheehy went months believing, as many PH patients do, that she was all alone until she learned of the support group from the Caring Voice Coalition, an organization focused on improving the lives of patients with chronic illness. Sheehy and Hamel formed a close bond and recently became the group’s coleaders, dedicating their lives to raising awareness about PH and providing support and hope to others affected by the disease.

Some of the patients in the Tampa Bay area support group rely mostly on oral and infused medications and as such deal with issues common to people battling chronic illness. Sheehy and some of the others in the group also use continuously delivered portable oxygen, which hinders their ability to get around. Hamel’s combination of PH therapies include oxygen during the night. Support group members are women, men and children of all ages who share a unique bond that only PH patients can understand, relating to one another’s struggles and joys. Members of the group take road trips together, go with one another to doctors’ appointments, visit one another during hospital stays, and on a few sad occasions have attended members’ funerals. The Tampa Bay group meets monthly, but members have grown to become friends who see each and check on one another regularly. The local group is one of 275 throughout the country supported by the Pulmonary Hypertension Association (PHA).

Working with Mayor Bob Buckhorn’s office, Sheehy and Hamel got Tampa to recognize Pulmonary Hypertension Awareness Month in November, when PHA marks the occasion nationally. As part of their awareness efforts, throughout November the two are also joining PHA to invite people from all walks of life to publicly acknowledge acts of kindness by taking PHA’s A Heart Cures Challenge. They are asking people to record a short video of themselves thanking loved ones for being there for them when it was needed the most or strangers for showing them kindness when it was least expected. The social media challenge, which takes the public to http://www.AHeartCures.org, runs through the end of November, which in addition to being Pulmonary Hypertension Awareness Month is also the month of giving thanks. By giving people a simple way to thank others for acts of kindness, the Tampa Bay support group leaders are able to work with PHA to spread awareness about PH and possibly save lives in the process.

“My goal is for people to be just as aware about PH as they are about breast cancer,” Sheehy said. Both women are doing what they can to make that happen.

About the Pulmonary Hypertension Association:

Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Commemorating its 25th anniversary in 2016, PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families; healthcare professionals and researchers. For more information on PHA’s patient, healthcare professional and research community programs and to learn how you can support PH patients, visit http://www.PHAssociation.org and connect with PHA on Twitter @PHAssociation and on Facebook at http://www.facebook.com/PulmonaryHypertensionAssociation.

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Jordan Jennings
@PHAssociation
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