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September is Pulmonary Fibrosis Awareness Month and we’re pleased to join the Pulmonary Fibrosis Foundation in shedding light on this disease.

Pulmonary fibrosis is a group of serious diseases that cause progressive scarring in the lungs. The scarring limits the flow of oxygen to the brain, heart and other organs. Lung tissue becomes thick and breathing becomes difficult.

Symptoms of pulmonary fibrosis include

  • Bothersome dry cough
  • Breathlessness
  • Fatigue

Symptoms worsen as the lungs develop more scar tissue. As the disease progresses, people may become breathless during regular daily activities like showering, getting dressed and talking on the phone.

Each year, 50,000 Americans are diagnosed with pulmonary fibrosis, and today more than 200,000 Americans are living with these diseases. There are no cures for pulmonary fibrosis, only treatments to make patients more comfortable.

What Causes Pulmonary Fibrosis?

The causes and risk factors for pulmonary fibrosis include:

  • Exposure to indoor mold
  • Exposure to indoor or caged birds
  • Prior or current exposure to asbestos, coal or silica
  • Autoimmune conditions such as rheumatoid arthritis, scleroderma, dermatomyositis
  • Prior or current use of drugs which affect the lungs: amiodarone, nitrofurantoin, chemotherapy, methotrexate, or others
  • Prior or current radiation treatment to the chest
  • Family history of interstitial lung disease
  • Age: 1 in 200 people age 70+ lives with pulmonary fibrosis

What Happens if You're Diagnosed With Pulmonary Fibrosis

PF can be difficult to diagnose because its symptoms are similar to other more common illnesses. It can take months or years after experiencing the first symptoms for people to get the correct diagnosis.

Once a doctor realizes a patient may have pulmonary fibrosis, the patient will get a special CAT scan of the chest to see what the lung tissue looks like. A lung biopsy may be ordered to help the doctor determine which of the many types of pulmonary fibrosis the patient has, and what treatments are best.

Doctors treat PF with medications, oxygen therapy, non-medical treatments such as exercise, and even lung transplants.

Early diagnosis is important to getting the best treatment for pulmonary fibrosis.

Symptoms of Pulmonary Fibrosis are Unique to Each Person

There is no “usual” experience for patients with pulmonary fibrosis. Some people have severe symptoms, and some have none at all. Some people live an almost normal life for many years, but others experience severe symptoms.

“My life has slowed down quite a bit. I require supplemental oxygen for most of my activities and that has made things a little more challenging. But it has helped me refocus my priorities and concentrate on the things and people that matter most to me. I treasure each day, I try to create memories with those I love, and I do what I can to leave a positive mark on the world.” - Heather Kagel, ambassador for the Pulmonary Fibrosis Foundation.
heather-kagel-pulminary-fibrosis

What Should I do if I am Diagnosed with Pulmonary Fibrosis?

1. Make an appointment with a pulmonologist (lung doctor) who has experience caring for patients with pulmonary fibrosis.

2. Join a support group for others living with pulmonary fibrosis.

Help is Available Through the Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation (PFF) offers support for patients, caregivers, healthcare providers and people who have lost a loved one to PF.

“Being diagnosed with a rare disease can be isolating. The resources we offer, such as the PFF Patient Communication Center, website, disease webinars and Pulmonary Fibrosis Information Guide, serve to support our community and improve their lives. We aim to connect resources, both local and national, to assist patients and their families." - Dr. Gregory Cosgrove, pulmonologist and Chief Medical Officer for the Pulmonary Fibrosis Foundation.

Awareness is on the Rise

From Broadway to the gridiron, members of the PF community nationwide are stepping up to help raise funds and awareness for a cure.

Actress and comedienne, Julie Halston hosts the best of Broadway in “Broadway Belts for PFF! annually in New York City. Halston lost her husband, Ralph Howard, to PF.

Chicago Bears running back, Jordan Howard, an advocate for the Pulmonary Fibrosis Foundation, has launched several awareness and fundraising initiatives since he joined forces with the PFF in 2016. Howard auctioned PFF branded cleats in the NFL’s My Clause, My Cleats campaign. Howard’s father, Reginald B. “Doc” Howard, passed away from PF at age 52 when Jordan was only 12 years old.

Photo: Jordan Howard

Good News

The good news for people with PF is that there are treatments to manage the symptoms and researchers are studying new therapies, faster diagnosis and a cure.

For more information, please contact the Pulmonary Fibrosis Foundation at pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the U.S.

September is Pulmonary Fibrosis Awareness Month and Home Care Assistance joins the Pulmonary Fibrosis Foundation (PFF) to shed light on this disease.

About the Author(s)

President and Chief Executive Officer – Pulmonary Fibrosis Foundation

William T. Schmidt was named President & CEO of the Pulmonary Fibrosis Foundation (PFF) in August 2017. As President & CEO, Mr. Schmidt is responsible for the overall management and direction of the Foundation, which is the leading national organization that mobilizes people and resources to provide access to high quality care, and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives.

Prior to joining PFF, for 12 years he was CEO of the Foundation Fighting Blindness, the largest non- governmental source of funding for retinal degenerative disease research in the world. Mr. Schmidt has extensive experience as a senior executive for a number of high-profile and respected health research advocacy organizations, including the Juvenile Diabetes Research Foundation International (JDRF).

As Vice President of Public Affairs at JDRF, he directed the government relations, communications, media relations and foundation relations departments. An honors graduate of Amherst College, Mr. Schmidt also received his J.D. from the DePaul University College of Law and completed the Kellogg Graduate School of Management’s Executive Development Program.

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