This website highlights the disconnect between the optimal diagnostic path of IPF and the real-world situations.
video link: http://vimeo.com/234093101
Brussels, Belgium 16 September 2017: The European Idiopathic Pulmonary Fibrosis;
Related Disorders Federation (EU-IPFF) has today published the first ever European Consultation Guide on Idiopathic Pulmonary Fibrosis (IPF), a rare, progressive and irreversible lung disease that affects over 100,000 people in Europe.
Idiopathic Pulmonary Fibrosis can have a significant impact on patients’ quality of life.
Newly-diagnosed patients in particular need reliable, unbiased and accurate information about the disease. To this end, the EU-IPFF’s comprehensive Consultation Guide, compiled by its member organisations in collaboration with scientific experts of international repute, aims to improve patients’ care and strengthen the patient-physician relationship.
Commenting on the publication of this guide, Liam Galvin, Secretary of the EU-IPFF Secretary, noted that “It can be emotionally challenging for newly-diagnosed IPF patients to discuss IPF and understand how to live with the disease. With this new guide, we hope to provide such patients with all the information they might need in an easily-digestible way.”
While not intended to replace expert medical advice, this Consultation Guide provides educational information on the signs and symptoms of the disease, diagnostic tests, pharmacological and non-pharmacological treatment options, and tips for managing the disease and finding support. The Guide also include patient testimonials and stories from real patients, which may prove comforting or helpful for those learning to accept, and live with, their diagnosis.
“Idiopathic” means unknown – no one knows the exact cause of IPF. What is understood is that, with IPF, there is a change in the lung’s normal healing process that produces extra scar tissue. Unfortunately, there are no symptoms of this change until the scar tissue builds up in the lungs and affects breathing. The causes of this abnormal healing process are unknown, but there are a number of factors that may be associated with an increased risk of developing IPF.
Cigarette smoking may increase the risk of developing IPF. Some cases of IPF occur in patients who have family members with IPF, which suggests that genetics may contribute to the risk of developing IPF in certain individuals. Although these risk factors are associated with IPF, it is important to remember that they have not been shown to cause IPF − the cause of the disease is still unknown.
The precise incidence and prevalence of IPF is difficult to determine, however it is a relatively rare disease. Based on several sources it is estimated that there will be approximately 30,000–35,000 new patients diagnosed with IPF in the 27 EU countries each year. More cases generally occur in men than in women and it is usually diagnosed in adults who are aged between 40 and 80 years old.