Leapcure focuses on making patient voices a priority for researchers. We know that patients are experts in their condition and we value providing a platform for patients to share their experiences to help push research forward. During Pulmonary Fibrosis Awareness Month, we spoke with a patient diagnosed with IPF about her experience with this disease and her thoughts on clinical trials. Throughout our conversation she was a beacon of light and positivity, even when discussing the seriousness of her diagnosis.
From a patient perspective, many people have never heard of Idiopathic Pulmonary Fibrosis until it directly affects them or someone they know. The patient explained, “I imagine many of you have not heard of this fatal, incurable disease. IPF scars the lungs making breathing progressively more difficult. The walls of the lungs thicken and harden and subsequently, oxygen doesn’t flow as it should to your brain and vital organs.”
We further discussed her battle with IPF and how it affects her daily life. The patient revealed, “It’s not easy living with IPF. The shortness of breath and extreme fatigue prevent you from participating in many of the joys of life you knew before. Especially now during Covid where you must isolate to prevent infection. I don’t leave my home for months at a time and when I do go out, I must lug a portable oxygen unit and watch the clock because I have just a few hours of battery life.”
When discussing her diagnosis, the patient informed me she was given a prognosis of three to five years. She explained the prognosis can be different for everyone and that many factors contribute to how your body responds like other health ailments, lifestyle, and access to treatments. The patient shared she is taking one of the two drugs approved in the hopes of slowing down the scarring in her lungs. She reported, “Unfortunately, only 40% of patients respond to the medications. I don’t think I am in that 40% because my lungs are getting worse in a shorter time than I expected. I still take the pill which causes a lot of side effects; pain, bloating, diarrhea, nausea, vomiting, and fatigue. Faint hope keeps me taking it.”
Throughout her diagnosis and treatment plan, she has remained hopeful that medical breakthroughs are on the way. Although there is no cure for IPF yet, hearing patients’ experiences continues to help us support clinical research. Patient education about clinical trials and their own conditions is vital in finding potential cures for rare and life-altering diseases.