Jan Hale first heard of Idiopathic Pulmonary Fibrosis when her mother was diagnosed with it in 2004. In less than a year her mom died at the age of 78. A decade later, Jan’s older brother got the same diagnosis and within three years he needed a lung transplant. Eight and a half months later a blood clot moved to his brain, and he died at 65.
Now Jan is fighting her own battle with IPF. Though someone at her mother’s funeral had suggested that family members get checked since the disease can run in families, she says she was too scared and didn’t want to know. When Jan was finally diagnosed in 2019, she had been experiencing a chronic dry cough for more than a year and her doctor estimated she had a year to live.
So far Jan is beating those odds, willing herself to live for her grandchildren, including one she’s raised since birth.
“I just keep praying for more time. They say as many die from this as breast cancer, and I just keep asking why there’s no cure – why it’s not researched more,” Jan shares. “I don’t understand because it’s a horrible disease.”
Jan’s family’s case isn’t unusual. Research from Brigham Women’s Hospital, Harvard Medical School, found that 31% of first-degree relatives of patients with pulmonary fibrosis had interstitial lung abnormalities on CT. Of the relatives with abnormalities, some had further evidence of interstitial lung disease (ILD), an umbrella term used for a large group of diseases that cause fibrosis of the lungs. Additionally, investigators concluded that “first-degree relatives of patients with both familial and sporadic [nonfamilial] IPF appear to be at similar risk [for undiagnosed interstitial lung disease (ILD)].”
Here at the IPF Foundation, we believe that research is the fastest path to cures.
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