ANNOUNCING: Pennsylvania IPF Support Network!
FOR IMMEDIATE RELEASE Contact: Jennifer Wescoe Singley
January 26, 2021 email@example.com
ANNOUNCING Pennsylvania Idiopathic Pulmonary Fibrosis (IPF) Support Network
LEHIGH VALLEY, PA — Pennsylvania launches one of a kind Pennsylvania Idiopathic Pulmonary Fibrosis (IPF) Patient and Caregiver Support Network. The goal of the network is to raise awareness of Idiopathic Pulmonary Fibrosis (IPF) and provide support and education to patients, families and healthcare providers throughout the Commonwealth of Pennsylvania.
“Although often overlooked by the public, the devastating effects of Idiopathic Pulmonary Fibrosis are all too familiar to those who are, or have loved ones, suffering from this debilitating disease,” Senator Pat Browne (R-Lehigh) said. “Through the establishment of this one-stop resource, the Pennsylvania IPF Patient and Caregiver Support Network is leading the nation in combating this disease by educating patients, families and the public on IPF. These efforts are critical, more than ever before, as we navigate through the COVID-19 pandemic.”
The network was established and supported by a $100,000 state grant secured by Senator Browne.
IPF is a rare, debilitating and fatal lung disease of unknown origin that affects as many as 132,000 Americans. The disease causes progressive scarring of the lungs, resulting in continuous and irreversible deterioration in lung function and breathing difficulties. As IPF progresses, lung function gradually and irreversibly deteriorates. Typically, IPF presents in patients between ages 50-70 years of age. Most patients live only an average of three years yet some live much longer.
“IPF is a debilitating lung disease that limits patients’ activities and reduces their independence,” said Dr. Gerard Petersen, Chief Pulmonologist, Lehigh Valley Health Network. “The support network is vital to provide patients and their families strategies to adapt and recapture some of these losses.”
The world has been shaken by the COVID-19 pandemic as Pennsylvania has been one of the epicenters in the United States. IPF is one of the compromised respiratory diseases targeted by COVID-19. Now more than ever, the needs of Pennsylvania’s pulmonary fibrosis community are heightened in managing medical care, support (both emotionally and in navigating the disease) and continuing education and awareness.
Approximately 7,000 Pennsylvanians suffer from IPF. The commonwealth has become a leader in research and treatment of IPF with more than 15% of all lung transplants in the United States performed in Pennsylvania hospitals. More than 50% of IPF cases are initially misdiagnosed and people with IPF often spend one to two years seeking a diagnosis. It is not easily recognized and often takes a team of specialists to make an IPF diagnosis. Early diagnosis is paramount to provide proper treatment and support. IPF can be life threatening and kills approximately 40,000 people in the United States each year—as many as breast cancer—however, the disease remains virtually unknown and receives a fraction of the research funding.
“When my husband, Bill, was diagnosed with IPF in November 2019 we had never heard of this disease and were shocked by his diagnosis,” said caregiver Mary Tunke. “We then attended a seminar and met Jennifer Wescoe. Since that time, we have participated in several support groups and honestly, I don’t know where we would be without them. Through these support groups we have received information about IPF as well as advice in getting financial help for the very costly treatment drugs. Without these support groups we would not have received the much needed love and support that we need to understand and deal with IPF.”
“The Pennsylvania IPF Support Network is a long awaited valuable resource for Pennsylvanians living with this devastating disease,” said Jennifer Wescoe Singley, Executive Director of the Wescoe Foundation for Pulmonary Fibrosis and Program Director of the PA IPF Support Network. “Our great state is leading the way to connect patients and their carpartners/families to support, education and resources through a newly developed website, patient guide, podcast, patient and provider checklist, newsletters and more developing resources.”
The PA-IPF Support Network website at PA IPF Support Network with podcast dates, state-wide support groups, resources. We are on all social media platforms (Facebook, Instagram, LinkedIn, and Twitter) for continued effective communication and outreach at @paipfsupportnetwork #PAIPF #PAIPFSupportNetwork #PApulmonaryfibrosis
Wescoe Foundation for Pulmonary Fibrosis is a non-profit 501(c)3 organization that provides education, support, advocacy and resources for patients living with Idiopathic Pulmonary Fibrosis (IPF) and their families in order to sustain the highest possible quality of life.