IPF (Idiopathic Pulmonary Fibrosis) is a chronic disease affecting the lungs that usually occurs in people between the ages of 50 and 70. According to the National Institutes of Health, this condition affects around 100,000 people in the U.S. today. In this post, we will share several common questions and concerns about IPF, and offer insights on potential treatments.

Receiving an IPF diagnosis can be worrying, but there is potential hope in clinical research. If you would like to learn more about IPF, or if you want to hear about upcoming clinical trials that you may be eligible for, please enroll in our research registry here!

Is IPF hereditary?

In most cases, IPF is not hereditary. However, in some cases, familial IPF (FIPF) does occur. FIPF is diagnosed whenever two or more relatives within the same family develop IPF. According to Action for Pulmonary Fibrosis, 20-30% of people diagnosed with IPF have a family history of the condition.

One patient shared their concern about familial IPF with Leapcure, saying, “Both my father and uncle died due to IPF. I’m starting to experience what appears to be early signs of IPF and I’m also close to the age that they were diagnosed – I hope to see a cure in my lifetime.” Stories like this one serve as meaningful reminders of the importance of pursuing the advancement of IPF treatment.

IPF and Treatment

Although there is no cure for IPF today, medications such as nintedanib, pirfenidone, and antacids, as well as treatments such as pulmonary rehabilitation and oxygen therapy, have been shown to slow the progression of IPF and improve patients’ overall quality of life. For more information about IPF treatments, diagnoses, and support groups, the Pulmonary Fibrosis Foundation is an amazing resource.

Existing medications have been helpful for some patients in managing the progression of IPF. Relaying their experience with IPF treatment, one patient shared with Leapcure, “I’ve been on oxygen 24/7, which is very frustrating because I’ve always been very active. Currently, I have pneumonia in both lungs, so for now, I can only sit, look outside, watch TV, and nap. I’m also on Esbriet, not a cure, but it slows the disease.”

Sometimes medication can be expensive and difficult to obtain, even when it is essential for treatment. As one patient told Leapcure, “The condition of my lungs is getting worse and worse. I stopped taking the medication because I can’t afford it, the price is too high, and I don’t receive help from my health insurance.” For patients who may be having difficulty accessing treatment, participating in clinical research can be a great alternative option.

Another patient described their experience coping with the seriousness of an IPF diagnosis, telling Leapcure, “I’ve felt quite at sea since receiving my diagnosis last month. I plan to ‘live until I die,’ staying as positive as I can.”

While an IPF diagnosis may bring uncertainty, it’s important to remember that it’s not the end of the story. There is hope for healthy living through both existing medications and future clinical research.

If you or someone you know might be interested in helping to advance IPF research, we invite you again to explore our research registry.