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What Is It Like To Live With Interstitial Lung Disease

Interstitial Lung Disease: The fear of a disease persists only till we understand it. Knowledge about the nature of the disease and the treatment options available goes a long way in conquering that fear.

What Is It Like To Live With Interstitial Lung Disease

Earlier diagnosis leads to initiation of treatment at the initial stages of the disease itself

Interstitial lung disease (ILD) is a term used for a group of disorders that cause inflammation and scarring of the lungs. This includes more than 200 different conditions around the balloon-like air sacs in your lungs, called the alveoli. Oxygen travels through the alveoli into your bloodstream. When scarring of lungs occurs, these tiny sacs cannot expand completely. As a result, less oxygen enters your blood.

Dr Bornali Datta, Director, Pulmonary Medicine, Department of Respiratory, Medanta Hospital, Gurugram says "The consequences of low oxygen in the blood leads to shortness of breath which worsens over time leading to fatigue. Dry cough which persists for a long time is also an indication of a progressive disease. Thus, it becomes imperative to visit a doctor and get an early diagnosis. Earlier diagnosis leads to initiation of treatment at the initial stages of the disease itself. Thus, it not only prolongs the life of the patient but also to lead a better quality of life."

"The challenge in treating ILD however remains not the bare cupboard of treatment strategies. It is the urgent need to educate patients about the disease itself. Most of the patients who visit us and have been diagnosed with ILD have never heard of these diseases. So instead of passing knowledge on which to build their understanding of the disease, our words to explain the disease leads the patient to process the condition without fear and unfamiliarity," Dr Bornali Datta concludes.


Most of the patients who visit us and have been diagnosed with ILD have never heard of these diseases. Our words to explain the disease leads the patient to process the condition without fear and unfamiliarity.
Dr Bornali Datta
Director, Pulmonary Medicine, Department of Respiratory, Medanta Hospital, Gurugram

Dr Pratibha Gogia, Senior Consultant and Unit Head, Pulmonology & Sleep Medicine, Venkateshwara Hospital, Dwarka claims "Many people living with interstitial lung disease come to us after hearing there is not much hope or when their current ILD treatment plan is not helping them. From navigating the healthcare industry to understanding the condition, it becomes difficult to connect with themselves, pushing them to depression. The newer modalities in treatment for interstitial lung disease works to promote healing from within the lungs and have the potential to improve quality of life"

"Coming to the prognosis and survival of interstitial lung disease, it can vary from person to person and depending on what caused it. Sometimes it progresses slowly and in other cases, it worsens quickly. Your symptoms can range from mild to severe. Some interstitial lung diseases have a better prognosis than others. One of the most common types, called idiopathic pulmonary fibrosis, can have a limited outlook. The average survival for people with this type is currently 3 to 5 years. It can be longer with certain medications and depending on its course. People with other types of interstitial lung disease, like sarcoidosis, can live much longer," ends Dr Pratibha Gogia.

Your symptoms can range from mild to severe. Some interstitial lung diseases have a better prognosis than others. One of the most common types, called idiopathic pulmonary fibrosis, can have a limited outlook.
Dr Pratibha Gogia
Senior Consultant and Unit Head, Pulmonology and Sleep Medicine, Venkateshwara Hospital, Dwarka

Dr Manav Manchanda, Sr Consultant and HOD,Asian Institute of Medical Sciences, Faridabad reassures "Most of the patients that I have seen have been active for most of their life and now they come dejected as they cannot do things they once enjoyed. Patients may feel slowed down and less spontaneous. They feel self-conscious about being on oxygen or having a chronic cough, and reluctant to go out in public. Many people miss doing the things that made their life fun like traveling, dancing, gardening, walking, and spending time with family and grandchildren."

Most of the patients that I have seen have been active for most of their life and now they come dejected as they cannot do things they once enjoyed. Patients may feel slowed down and less spontaneous.
Dr Manav Manchanda
Senior Consultant and HOD, Asian Institute of Medical Sciences, Faridabad

"These are common losses with chronic lung disease that must be grieved like losing a loved one. It is normal to feel angry, afraid, sad, depressed, guilty, stressed and frustrated with these changes. The patients need to be given their own space and allow them to feel all these things. Adjusting to an illness is a process and will not happen overnight. Be patient; learn more about the disease and how to make lifestyle adjustments to have an improved quality of life," Dr Manav Manchanda gives us a parting advice.


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The fear of a disease persists only till we understand it. Knowledge about the nature of the disease and the treatment options available goes a long way in conquering that fear.

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