The Pulmonary Hypertension Association (PHA) is calling on people affected by pulmonary hypertension (PH) to attend the free PHA on the Road: PH Patients and Families Education Forum it is helping to sponsor on Nov. 1, at the Marriott Waterside Hotel & Marina in Tampa, Florida.
The PHA will join two Tampa Bay survivors who are firsthand witnesses of the effects of PH, Carolyn Sheehy and Jodi Hamel, for a daylong program, starting at 8:00 a.m., to raise awareness for PH throughout Pulmonary Hypertension Awareness Month, the association announced in a press release.
Sheehy, 64, began noticing her symptoms over 10 years ago. After being diagnosed with asthma, chronic obstructive pulmonary disease (COPD), and a series of other illnesses, she saw a PH specialist about four years ago who was finally able to give her a correct diagnosis.
The specialist put Sheehy on a combination of two targeted therapies (of the 14 that the U.S. Food and Drug Administration has approved for PH treatment). She thought she was all alone in dealing with her disease, until she learned about the support group led by the Caring Voice Coalition, an organization working to improve the lives of patients with chronic conditions.
This is where Sheehy and Hamel met and formed a close bond, which eventually helped both activists to become the group’s co-leaders. Today, the two women are dedicated to raising awareness about PH and providing support and hope to those touched by the disease.
Hamel, 50, found out she had PH six years ago, and her diagnosis was confirmed by right heart catheterization just months after she began experiencing symptoms. At the time her pulmonologist, Dr. Mark Rumbak, MD with the University of South Florida, told her about PHA’s Tampa Bay patient and caregiver support group, and helped her to find a support community. Rumbak will also speak at the PHA on the Road forum.
Sheehy and some of the other members of their support group use continuously delivered portable oxygen, limiting their mobility, and Hamel, for instance, must use a combination of PH therapies and oxygen during the night.
Members of the group include women, men and children of all ages who relate to each other’s struggles and victories in a way that only PH patients can understand. The group allows these members to take road trips together, find company to doctors’ appointments, visit one another during hospital stays and just have a friend around, for when it’s most needed.
The Tampa Bay group, which allows these members to take road trips together, find company for doctors’ appointments, or visit one another during hospital stays, meets once a month, but many members have grown to become friends who see each other regularly. The local group is one of 275 support groups that the PHA supports nationwide.
Sheehy and Hamel singlehandedly worked with Mayor Bob Buckhorn’s office to get Tampa to recognize PH Awareness Month in November, and to make the PHA on the Road event possible.
The two activists also join with the PHA in inviting others to publicly acknowledge random acts of kindness through the PHA’s A Heart Cures Challenge. By giving thanks for kindness, the Tampa Bay leaders wish to raise 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.