Until my father was finally diagnosed with Idiopathic Pulmonary Fibrosis (IPF), I had never heard of IPF before. But for my father, having a diagnosis at last, meant an end to his sense of helplessness and frustration. In his own words, At last, my illness has a name. For a very long time, my father had had this dry, hacking cough that everyone assumed would simply go away. It progressively got worse and he would break into such a racket during conversation that we were very concerned and insisted that he saw a doctor immediately. Little did we know that he was fighting such a debilitating disease! Years later, and numerous tests, he was none the wiser and no doctor could explain why his condition continued to deteriorate. Finally, within fifteen days of being admitted into Mount Sinai hospital in New York and further tests, he finally received a dual diagnosis of IPF and Squamos cell cancer. Although cancer remains the single most feared disease, for my father IPF was the worst. The good news was getting a diagnosis. The bad news was 87% of patients diagnosed with IPF die within two years. Despite his prognosis, my father bravely decided to fight the cancer with chemotherapy and radiation until his lungs gave up on him six weeks after. Losing my father to IPF opened a new world to me; and a relatively unknown and often misdiagnosed disease that claims as many as 5 million lives worldwide. What is Pulmonary Fibrosis? Pulmonary Fibrosis (PF) literally means lung scarring. The scarring develops when the tiny air sacs that transfer oxygen to the blood, become damaged and inflamed. The body attempts to repair the damage by producing scars on the lung tissue. But this scarring thickens and stiffens the lungs causing an irreversible loss of ability to transfer oxygen into the bloodstream. Symptoms of pulmonary fibrosis include shortness of breath, chronic cough, fatigue and weakness, discomfort in the chest, loss of appetite, and rapid weight loss. What causes IPF? Traditional theories have postulated that it might be an autoimmune disorder, in which the body's immune system attacks its own tissues. A growing body of evidence points to a genetic predisposition. Other known causes for PF are Inhaled environmental and occupational pollutants In a majority of cases such as my fathers when the cause is unknown, it is referred to as Idiopathic Pulmonary Fibrosis (IPF), meaning unknown cause. How widespread is IPF? At least, five million people suffer from Pulmonary Fibrosis worldwide It claims as many lives as breast cancer each year, and affects both men and women, with a slightly higher incidence in men. The onset age is between 40-70, but it can occur at any age. Although uncommon it has been diagnosed in children as young as three years old. It has no specific geographical location, and can be found in equal proportions in urban and rural environments. Marlon Brando died from pulmonary fibrosis last July at age 80 There are currently no effective treatments or cure for IPF, neither is there a known prevention. The biggest problem for PF patients is their invisibility; they are the unseen victims of a disease that most people have never heard of. My last memories of my father were having his oxygen equipment and the tubes leading to the concentrator or cylinder everywhere he went. He could barely leave his bedside for fear that my two-year-old nephew would tag and pull at the tubes. During our last phone conversation, the day before he died, he could hardly breathe but he insisted on talking. For my father it was too late, however through public education, advocacy and increased funding for research, 5 million sufferers worldwide wait in hope that a cure may be found for Idiopathic Pulmonary Fibrosis. |
