If you have recently been diagnosed with Idiopathic Pulmonary Fibrosis (IPF), you probably have a lot of concerns and questions that you wish to discuss with your doctor and healthcare professional team.

These might be about:

  • the disease;
  • your diagnosis and treatment options; or
  • how IPF will affect your day-to-day life.

You may also be scared, worried, angry, or confused. We hope this guide can help you. This guide has been compiled by the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) to give you some important information about IPF. However, this document has been developed for educational purposes only; please consult your doctor to discuss any medical information. We do not provide medical advice, and the content of this guide does not replace the advice and medical opinion of your doctor.

We have included sections about:

  • what symptoms you may experience;
  • tests you may have for diagnosis;
  • monitoring your lung disease; and
  • possible treatments (with or without medicines) available to you.

It can be emotionally challenging for you to discuss the disease, but some things can make managing your condition easier. This includes having access to a multidisciplinary team of doctors, nurses and specialists; and making lifestyle changes. This guide includes information about this. It also includes information about how the disease is likely to progress and what other related conditions could develop.

Since IPF is a rare disease, you may feel isolated or alone after your diagnosis.IPF patient associations and groups can have a huge impact on you and provide a platform for other patients and carers to share advice and experience with you, your family and friends. We have included contact details for relevant associations in section 13. In addition, we have also included patient and carer stories to provide a first-hand experience on the different subjects mentioned in this guide. These stories are clearly differentiated in the text.

We hope this guide is useful to you, your family and friends, or anyone you know who has recently received a diagnosis of IPF.

We welcome any suggestions for information that should be included in this guide – please get in touch (secretariat@eu-ipff.org).

Best wishes from,

Liam Galvin