Over the course of 10 years, a woman watched as five of her family members died from a perplexing lung disease with no cure that can kill patients as soon as a year from diagnosis. Despite its severity and the thousands of people affected by the disease every year, it remains widely unknown to the American public.
During a disastrous period starting in 1996, Teresa Barnes of Memphis, Tennessee, lost her father, aunt and three uncles to idiopathic pulmonary fibrosis, or IPF syndrome, an incurable disease with no known cause which affects 30,000 to 40,000 new people every year in the United States. The syndrome increasingly scars and thickens the tissue of the lungs, making breathing laborious. As the lungs struggle to distribute oxygen to the bloodstream, patients experience worsening coughs and shortness of breath as the brain and other vital organs struggle for nutrients.
“Imagine taking a pillow case and putting it over your face and trying to breathe,” Barnes tells PEOPLE. “Patients are struggling and there’s not one thing they can do to make things better.”
According to the Mayo Clinic, symptoms of the disease include a dry cough, fatigue, unexplained weight loss, aching muscles and joints, and a clubbing of the fingertips. Most people who are affected are between the ages 50 to 70.
On average, patients with IPF succumb to the disease within three to five years after first showing signs of symptoms, according to the National Institute of Health. Some patients can die sooner, or much later, depending on how the disease progresses for them. Though the progression can vary from patient to patient, none will see their health return to the status it once was. Approximately 132,000 people in the U.S. have the disease and about 40,000 die annually from it, according to NIH.
“It was torment to watch a family member suffering like that,” Barnes says. “It takes a toll every day.”
One by one, Barnes’ family went from experiencing mild breathlessness to becoming completely dependent on an oxygen tank in a matter of months. Barnes says her father, who was the first to exhibit symptoms, was not able to walk across the room without feeling as if he was going to faint in the time leading up to his death. Barnes has…