The worsening of a disease/condition over time
A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf
Refers to the lungs
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
A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15
Therapy that provides relief from symptoms to help patients live more comfortably with their disease13
Administration of oxygen as a medical intervention11
A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11
Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF
A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12
A specialist who helps someone recover or live with their symptoms more easily
A machine that removes other gases from the air to provide oxygen for oxygen therapy11
An education and exercise program designed to improve the quality of life for people with lung conditions16
A physician specialised in lung problems (also known as a respirologist)
A product that gives protection against a specific infection
A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11
A breathing technique to help control breathlessness and reduce anxiety17
A disease that affects only a small percentage of the population
Something that is associated with an increased risk of disease or infection
A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions
Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing
A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease
A disease or condition that occurs at the same time as another disease or condition
A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6
A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7
A type of chronic disease that typically worsens over time and is characterized by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5
Refers to the heart, and blood vessels
A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2
Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place
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
Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs
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
A lung condition where the air sacs within the lungs (alveoli) become damaged5
Extreme weariness resulting from exertion or illness
Of unknown cause
Rapid and uncontrolled breathing
A disease where there is progressive scarring or thickening of the lungs without a known cause4
The surgical removal of cells or tissue samples from the lung for examination by a pathologist10
The lung tissue becomes thickened and stiff
A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4
A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth
Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4
A symptom where the ends of the fingers become wider and rounder8
A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9
A physician specializing in the management of diseases of the digestive system
An event characterized by sudden, severe worsening of symptoms or an increase in disease severity1
Following a diagnosis of pulmonary fibrosis, many people can feel isolated. However, it is important to remember that you are not alone, and there are many other people who have shared similar experiences to you. These people often come together at support groups. Patient support groups are a valuable resource to help you through your journey.
Participating in a patient support group offers you an opportunity to get together and connect with others who are facing similar experiences. Patient support groups can help you to better manage your physical and mental health and the everyday challenges of living with pulmonary fibrosis. If you are feeling isolated, support groups can help you to feel comfort and understand that you are not alone.
Online resources
As well as patient support groups that you can attend, there are also online groups where you can connect with other patients like you. Patient organizations support people with pulmonary fibrosis by having online groups where patients can connect with others who face similar challenges and also obtain information about living with the condition.
How can I find local and online patient support groups?
Your treatment team may be able to direct you to patient support groups in your area. Searching the internet can also provide you with information on online patient organizations and the support they provide.
Key Takeaways
-
Community and support groups can be helpful to connect you to other people living with pulmonary fibrosis
-
Going to a patient support group can help you to learn from others with similar experiences
-
Speak to your treatment team about patient support groups online and in your area
Worldwide there is an increasing awareness about the disease, and there are also associations of patients, and patient advocacy groups
Carer support groups
Carer support groups allow carers to share their feelings and help them stay strong and committed
Planning for the future
Planning for the future is important to ensure you can live life to its fullest
