Interactive Calendar of Resources, More to Mark PH Awareness Month
Disease can be underdiagnosed as common symptoms mimic other conditions
Patients, caregivers, family members, and friends are set to mark Pulmonary Hypertension Awareness Month, observed each November to call attention to the complex, chronic, progressive disorder.
Awareness and education are vital to heightening the recognition, diagnosis, understanding, and management of pulmonary hypertension (PH), a disease associated with high blood pressure in blood vessels supplying the lungs.
Awareness month activities and events aim to raise awareness among lawmakers, industry representatives, health professionals, and public authorities, in addition to the general public.
The Pulmonary Hypertension Association (PHA), the nation’s oldest and largest nonprofit organization dedicated to PH, is presenting a host of ways supporters can get involved. This year’s theme is “PHacing the Future Day by Day.”
“PHA and the entire pulmonary hypertension community have made great strides over the years in creating awareness of this disease,” Tony Lahnston, chair of PHA’s board of trustees, said in a press release. “We continue that trajectory and face a bright future with improved support, diagnosis and treatment of PH through education, expanded resources and dedicated research. PHA staff and leadership remain committed to PHA’s mission to extend and improve the lives of those affected by PH.”
The PHA has again created an interactive online PH Awareness Month calendar that each day will reveal a fact or tool that can help bring more recognition to the disorder. PH is underdiagnosed partly because common symptoms — shortness of breath, chest pain, and fatigue, for example — can mimic those of other conditions.
Some calendar information will be about those symptoms as well as risk factors, in addition to the various types of PH. The disease can occur among those with, for example, left-heart disease, as well as associated conditions including chronic obstructive pulmonary disease, sleep apnea, and scleroderma. Those with congenital heart disease may also be at risk.
According to a preview emailed to Pulmonary Hypertension News, the calendar will include the release of seven session recordings from the June 9-12 PHA 2022 International Conference and Scientific Sessions, held in Atlanta. The biennial conference provided information about PH research, treatment, and disease management, along with networking events and support group meetings.
The calendar also will offer shareable social media graphics, social media posts, posters, and flyers highlighting facts about PH. There will be information and resources on the following days to support various awareness month events:
- Nov. 9: For chronic thromboembolic pulmonary hypertension (CTEPH) Awareness Day, the organization is separately offering a toolkit that includes sample social media posts, graphics, videos, a brochure, flyer and other materials. CTEPH is a form of pulmonary hypertension caused by blood clots that obstruct the pulmonary arteries.
- Nov. 15: At 2 p.m. EST, there will be a live PHA webinar titled “2022 Focus on Pulmonary Hypertension Research,” in which PH experts will share research advances from the PHA 2022 conference, and their potential impact on patients.
- Nov. 17: The Advocacy Day of Action, which is focused on oxygen access reform, will include an American Lung Association petition asking Congress to amend policies to assure that anyone who needs supplemental oxygen can get it. For more information, check out the PHA’s Advocacy Action Center.
- Nov. 29: Giving Tuesday is an invitation to join the global day of giving to support PH patients and help further PHA’s mission.
PH Awareness Month participants are encouraged to share calendar items with family, friends, media outlets, elected officials, and the general public so that they can learn about PH risk factors, symptoms, and diagnosis.
The organization is also offering an awareness month toolkit containing social media graphics, posts, and cover and profile photos, in addition to downloadable fact sheets, a customizable press release, an email signature, and fundraising tips.
PHA Canada marks month
Elsewhere, the Pulmonary Hypertension Association of Canada (PHA Canada) is marking Awareness Month by encouraging patients to share their story to media, work colleagues, or community groups, or by contributing to the organization’s Connections Magazine.
“If you or a loved one has been touched with pulmonary hypertension, you know that lack of awareness is one of our greatest challenges,” the organization states on an Awareness Month webpage. “But by coming together to raise awareness, each and every one of us can do our part to educate healthcare professionals, family members, friends, and the larger community of the challenges of living with pulmonary hypertension.”
PHA Canada’s “Sometimes It’s PH” campaign seeks to increase PH awareness among care providers, encouraging them to refer patients suspected of having PH to a specialized PH Center for diagnosis and treatment options. The campaign covers pulmonary hypertension symptoms and risk factors such as sex, age, family history, pregnancy, associated conditions, altitude, obesity, and certain kinds of medications, including chemotherapy for cancer.
The organization also is providing, upon request, awareness month assistance and tools such as educational materials, a banner or table-top display, help with event flyer design and printing, distribution of event flyers to area community members, and event promotion. It’s also offering fundraising help, information sheets, and educational PH videos.
“If those affected by PH do not tell others about it, no one will,” PHA Canada said. “Education leads to earlier diagnosis and better access to effective treatment. By raising your voice, you can help us shine a spotlight on this disease and make everyone from doctors to politicians take notice.”