What to Do If You Have Interstitial Lung Disease

ILD is not a single disease but a collection of disorders, including:

• Idiopathic pulmonary fibrosis (IPF)
• Autoimmune-related ILD
• Hypersensitivity pneumonitis
• Sarcoidosis

Each type behaves differently and requires an individualised treatment plan. Understanding your specific diagnosis is the first step to managing it effectively.

Management of ILD often involves a respiratory specialist and may include rheumatologists, physiotherapists and nurses.

Your doctor may recommend:

• Lung function tests
• High-resolution CT scans
• Blood tests
• Lung biopsy (rarely, and only when necessary)

Regular follow-ups allow your care team to track disease progression and adjust treatment when needed.

Treatment depends on the type and severity of ILD.

Common treatments include

• Anti-inflammatory or immunosuppressive medications
• Antifibrotic drugs in selected patients, to help slow lung scarring
• Treatment of underlying autoimmune conditions

It is important to:

• Take medications consistently
• Report side effects early
• Never stop treatment without medical advice

Shortness of breath is a common symptom of ILD.

Helpful strategies include

• Pacing daily activities
• Using breathing techniques taught by therapists
• Taking rest breaks when needed

Some patients may require long-term oxygen therapy, especially during activity or sleep, to maintain adequate oxygen levels.

Pulmonary rehabilitation programmes are highly beneficial for people with ILD.

They combine:

• Supervised exercise training
• Breathing exercises
• Education on symptom control

Regular physical activity helps improve stamina, muscle strength and confidence in daily activities.

ILD patients are more vulnerable to respiratory infections, which can worsen lung damage.

Protect yourself by:

• Getting annual influenza vaccination
• Staying up to date with pneumococcal and COVID-19 vaccinations
• Practising good hand hygiene
• Avoiding close contact with people who are unwell

Seek medical attention early if you develop fever, cough or worsening breathlessness.

Small lifestyle changes can make a big difference.

Key recommendations

• Stop smoking if you smoke
• Avoid exposure to dust, fumes and air pollution
• Maintain a balanced diet to support immune health
• Get adequate sleep and manage stress

If your ILD is linked to workplace or environmental exposure, discuss protective measures with your doctor.

Living with ILD can take an emotional toll. Anxiety, frustration and low mood are common, especially as symptoms fluctuate.

Support options include:

• Education and self-management programmes
• Counselling or psychological support
• Patient support groups

Talking to others who understand your experience can be reassuring.

Seek prompt medical attention if you experience:

• Sudden worsening of breathlessness
• New or persistent fever
• Chest pain
• Bluish lips or fingertips
• Extreme fatigue or dizziness

Early intervention can prevent serious complications.

Although ILD is a long-term condition, many patients continue to live meaningful and active lives with the right care plan. Taking an active role in your treatment, staying informed and maintaining close communication with your healthcare team are essential steps in managing ILD effectively.

The course of ILD varies widely – some forms remain stable for years, while others require closer monitoring. With the right support, you are not alone in this journey.

Ref: F26