Behind the Idiopathic Pulmonary Fibrosis Diagnosis

According to the National Institutes of Health, Idiopathic Pulmonary Fibrosis is a rare disease that affects about 100,000 patients in the United States. IPF causes the buildup of scar tissue in the lungs and makes breathing harder as the condition worsens. Here at Leapcure, we have had the privilege of speaking with over 1,500 IPF patients and gaining valuable insights from them. While having meaningful conversations with patients who have IPF, there seem to be a few key commonalities in their experiences. Some of these patients have graciously shared their stories of managing this lung disease with us. 

A setback many patients face is the steep price of the medications that are currently available to treat IPF.  One patient mentioned they simply cannot afford the copay for the treatment that has been offered to them. Without many options available the patient was left feeling hopeless. Finding out that there are clinical studies running to further IPF research made them feel as though they had something to look forward to. 

One patient was offered medication but after researching he decided it was not the best option for him. After this, he decided to take charge of his own health and use a holistic approach to ease his symptoms. This patient stressed that his mindset has been the biggest impact to his healing journey – by having a willingness to take control of his own health, he has now been able to stop using oxygen and has been able to get back into the gym. By taking different enzymes, switching to clean eating habits, and filling his house with oxygen rich plants and salt lamps his symptoms have continued to improve. All of these changes have been important in his health journey and he plans to continue advocating for himself and his health. 

But all in all, most patients are working together to help each other if they have the opportunity. One patient thanked us for doing what we do because it provides her with hope for the future of IPF. The patient let us know that even if we could not help her right now, we could help other people who are suffering in the future and that it meant a lot to her seeing time and effort put into research around Idiopathic Pulmonary Fibrosis. 

All of the conversations we have the privilege of having with patients continue to help us do what we do and do it better. Here are some resources – if you or someone you know is affected by IPF please feel free to look into some of our favorite patient advocacy groups: 

Home – Wescoe Foundation for Pulmonary Fibrosis

Breathe Support Network – breathesupport.org

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