PFF Patients Advocate and Inspire for National Patient Recognition Week

Sharing patient stories can help spread awareness for little-known diseases like pulmonary fibrosis, empowering patients to build support systems, pinpoint symptoms and take action early. For National Patient Recognition Week, Feb. 1–7, 2021, the Pulmonary Fibrosis Foundation (PFF) shares the stories of a few of their inspiring PFF Ambassadors.

Dot Ivey and family at a Pulmonary Fibrosis Foundation Walk

From leading or participating in support groups, or simply lending an ear when support is needed, patient advocates inspire hope as trusted resources for caregivers, loved ones and most importantly, other patients. With over 50,000 people diagnosed with pulmonary fibrosis (PF) each year, this is certainly a growing patient population within the rare disease community. For February’s National Patient Recognition Week, we decided to let you hear from a few of our volunteer PFF Ambassadors by sharing a few of their empowering stories. While it is not easy to navigate a diagnosis like PF, sharing patient stories can help build support and spread awareness for little-known diseases such as PF, so that patients can pinpoint ongoing symptoms and take action early.

86% of Americans* do not know the symptoms of PF, which include a dry, chronic cough, fatigue and shortness of breath. Symptoms of PF are easy to dismiss and are often similar to other illnesses, making it difficult to diagnose. Because PF becomes harder to treat in its later stages, it is essential to pinpoint symptoms early and discuss them with your doctor to maximize treatment options.

Certain populations are at a higher risk of PF including:

  • Those over the age of 60
  • Current or past smokers
  • Those with a family history of interstitial lung disease/PF

Representing the voices of tens of thousands of Americans living with PF, the PFF Ambassador Program is designed to empower patients and healthcare professionals to become advocates by promoting disease awareness, providing up-to-date information, and offering hope and inspiration to the PF community. For February’s National Patient Recognition Week, we decided to let you step into the shoes of a few of our PFF Ambassadors by sharing a few of their unique stories that describe how they navigated a difficult diagnosis with strength. Sharing patient stories can help start the conversation and serve as a reminder to patients that they are not alone.

Dot Ivey, PFF Ambassador

Dot always thought of herself as a carpe diem kind of person — someone who was eager to seize the day. With an active, healthy lifestyle, her days were filled with church and community activities. But when a case of pneumonia and cracked ribs led to a diagnosis of idiopathic pulmonary fibrosis (IPF) in 2017, she spiraled into despair. Determined to pull herself out of depression and shift her perspective, she came up with the “3 Rs” — research, renewal and reaching out. By following this plan, she was able to create a new normal and live each day to the fullest. Dot is an active voice in the PF community and has been involved in initiatives, including the PFF Walk in Washington, D.C., and advocates for legislative issues and political campaigns. She also started her own support group dedicated to PF patients.

Life with PF — Why Join a Patient Support Group
Samuel Kirton, PFF Ambassador

Attributing his chronic cough to allergies, Sam initially ignored his symptoms. His wife, Susan, however, became concerned and urged Sam to talk to his doctor about it during his annual physical. After many tests and meetings with specialists, Sam received the diagnosis of IPF in 2017 with Susan by his side. As they learned to live with the disease, they decided they were not going to let IPF stop them from doing the things they love. “Make every breath count” became their mantra and spreading the word about IPF and its symptoms became Sam’s calling. Today, he educates people about the disease as a PFF Ambassador and believes that increasing awareness and accelerating research is critical to winning the fight against IPF.

Sharon Eon, PFF Ambassador

After recovering from a heart attack, Sharon thought she was in the clear until a chest x-ray revealed scarring in her lungs. Unfortunately, her first pulmonologist did not fully communicate the diagnosis of IPF. It was not until a year later in 2019 that the IPF diagnosis was confirmed. Unable to find anyone near her who had the disease, Sharon fell into despair and isolation until her search for answers led her to the PFF, where she finally found a sense of community and connection with patients who were on a similar journey. Sharon attended the PFF Summit 2019 in San Antonio, Texas and encourages other patients to “Find Support, Give Support, Get Support” by connecting with others facing similar experiences.

To learn more about other inspiring patients in the PF community, check out the Life With Pulmonary Fibrosis video series on the PFF’s YouTube channel.

I want to emphasize that every person diagnosed with PF has a unique experience with the disease. Some patients remain in a stable condition for years with the disease, others experience rapid deterioration, but most patients find themselves somewhere in the middle, with good and bad days.

While there is no cure for PF, there are effective treatments:

  • Supportive care treatments such as supplemental oxygen and pulmonary rehabilitation
  • “Antifibrotics,” medications that slow down disease progression by about 50% on average, compared to no treatment
  • Lung transplantation, a surgical treatment for some individuals with late-stage PF

The PFF offers many ways you can help spread awareness about PF. I encourage patients to utilize the helpful resources, ongoing research and support that the PFF offers within the Patient Communication Center. In addition, The PFF’s numerous patient education resources include nationwide support groups, PFF Care Center Network, information guides and checklists, ongoing webinars and more. You can also view a library of educating and inspiring videos from patients, physicians and caregivers on the PFF’s website, here.

Learn more by visiting www.AboutPF.org or by contacting the PFF Patient Communication Center at 844.TalkPFF (844.825.5733) or email pcc@pulmonaryfibrosis.org.

Dr. Amy Hajari Case of Piedmont Healthcare is Senior Medical Advisor for Education and Awareness for the Pulmonary Fibrosis Foundation (PFF)