Idiopathic Pulmonary Fibrosis (IPF) is a condition that needs to be understood, especially to provide support to the many patients that suffer from this condition. In addition to navigating the diagnosis and symptoms associated with this condition, patients must also navigate difficulty in accessing care and information to properly understand their condition and explore options related to their quality of life and care.
Through conversations with patients and advocates, Leapcure has established a page to share video and written testimonials as well as advocacy groups that support IPF and PF patients. You can find this page here.
What is the difference between Pulmonary Fibrosis (PF) and IPF?
A common question that Leapcure hears is understanding the difference between pulmonary fibrosis and idiopathic pulmonary fibrosis, especially for patients that are initially receiving their diagnosis. Pulmonary fibrosis is the general term used to describe the condition where scarring (fibrosis) develops in the lungs. According to the National Heart Lung and Blood Institute, idiopathic pulmonary fibrosis is pulmonary fibrosis where the cause of the fibrosis is unknown. Essentially, IPF is a specific kind of pulmonary fibrosis.
In our conversations with advocacy groups, we hear from patients that those with non-idiopathic related pulmonary fibrosis often feel excluded by research that focuses specifically on IPF patients. Our goal at Leapcure is to support all patients suffering from pulmonary fibrosis in finding resources and patient advocacy groups that can help them better understand and advocate for their condition.
What are common IPF symptoms?
IPF symptoms can vary in their severity and can include the following:
- Persistent, dry cough
- Shortness of breath (dyspnea) that worsens with physical activity
- Fatigue and weakness
- Gradual, unexplained weight loss
- Chest discomfort or tightness
This is not a comprehensive list and there are several symptoms that may be related along with the ones included above. As a caregiver of a patient that we spoke with noted, “I just wish we might have known what she was dealing with sooner and been able to effectively treat the other symptoms that went along with the breathlessness.” It is important for both patients and caregivers to be aware of IPF symptoms so patients and caregivers can be prepared to address them within their IPF journey.
Caregivers as part of the IPF Patient Journey
Caregivers are an important part of the IPF care experience and need to be involved in conversations on diagnosing and treating symptoms of IPF. Due to increased prevalence of IPF in older age as well as the restrictions that these symptoms pose on quality of life, caregivers are essential to ensure patients are informed, have established treatment plans and support to travel to all necessary appointments. Given the importance of the caregiver in IPF and PF patient journeys, more work must be done to ensure that they are a part of the conversation regarding patient care and exploring new, novel treatment options.
As Leapcure continues to share information on resources available for IPF and Pulmonary Fibrosis patients, you can learn more about research options for the condition at the following link.
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