Life with Idiopathic Pulmonary Fibrosis

This website will support you to learn more about the disease and connect you with resources to help you and your loved ones

Find out more about IPF
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Have you recently been diagnosed with IPF?
Finding out that you have IPF can be difficult, but there are many things you can do to live life to its fullest
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As far as I'm concerned, life doesn't end with this... We still live a good life. We dine out, we travel to hotels, we enjoy life, and we socialise generally. I'd say don't give up, don't give up

Help us find the content that is right for you
Some days may be tougher than others. Regardless of how you're feeling we can point you in the direction of help. By telling us how you feel we can tailor our information and resources to your specific needs
Do you ever feel embarrassed about your cough?
A persistent cough is a very common symptom of IPF; however, there are ways you can manage it
Managing your cough
People with IPF face various challenges with their condition. Find resources to help you to tackle these challenges
Taking care of yourself
An operation to replace a patient’s diseased lungs with lungs from a donor
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The worsening of a disease/condition over time

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A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

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Refers to the lungs

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A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

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A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

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Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

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Administration of oxygen as a medical intervention11

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A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

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Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

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A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

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A specialist who helps someone recover or live with their symptoms more easily

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A machine that removes other gases from the air to provide oxygen for oxygen therapy11

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An education and exercise programme designed to improve the quality of life for people with lung conditions16

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A physician specialised in lung problems (also known as a respirologist)

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A product that gives protection against a specific infection

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A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

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A breathing technique to help control breathlessness and reduce anxiety17

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A disease that affects only a small percentage of the population

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Something that is associated with an increased risk of disease or infection

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A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

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Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

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A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

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A disease or condition that occurs at the same time as another disease or condition

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A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

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A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

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A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

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Refers to the heart, and blood vessels

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A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

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Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

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A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

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Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

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A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

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A lung condition where the air sacs within the lungs (alveoli) become damaged5

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Extreme weariness resulting from exertion or illness

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Of unknown cause

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Rapid and uncontrolled breathing

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A disease where there is progressive scarring or thickening of the lungs without a known cause4

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The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

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The lung tissue becomes thickened and stiff

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A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

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A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

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Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

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A symptom where the ends of the fingers become wider and rounder8

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A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

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A physician specialising in the management of diseases of the digestive system

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An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

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Caring for someone with IPF?

 

Being a carer for an IPF patient may be tough, but with the right information and resources, you can learn how to cope

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Continuing your journey
IPF can take an emotional toll as well as its physical effects, although there are many ways to help you cope with your feelings
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IPF patient stories
Sometimes it can help to hear how others have learnt to live with IPF. Hear the inspiring stories of people living with the disease including their challenges, triumphs and some of the adjustments they have made.
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Everybody deals differently with an illness. But you need a strong will to fight. This can only come from yourself.

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