Interstitial lung diseases (ILD) occur more frequently among men (81 per every 100,000) than women (67 per every 100,000). Men are slightly more likely to die when diagnosed with an ILD (64.3 deaths per million) compared with women (58.4 deaths per million), which may be because they are more likely to get idiopathic pulmonary fibrosis (IPF), the most common ILD. But some conditions within the complex umbrella of ILD tend to happen more in women than in men and vice versa.
Figure 1: ILD By Gender
Source: European Respiratory Journal 2019; 54: Suppl. 63, PA1413.
Differences by gender
It is worth noting particular differences for certain diseases:
Idiopathic pulmonary fibrosis (IPF), the most common of ILD, occurs more often among men than women. However, women have worse health-related quality-of-life issues and more severe symptoms than men with IPF.
Idiopathic pulmonary hypertension (IPH), often associated with rheumatologic diseases, happens more among women than men.
Lymphangiolelomyomatosis (LAM) happens almost exclusively among young (premenopausal) women. It is thought that the disease is linked to estrogen pathways, which is why it impacts women more.
Sarcoidosis occurs among women more than men, with a higher incidence among African-American women. Late onset (age 50 to 60) of sarcoidosis happens more frequently among women than men. Additionally, women with sarcoidosis have more functional impairments, a lower health-related quality of life, and higher likelihood of death than men.
Connective tissue disease-associated ILD and lung-dominant connective tissue diseases happen more in women than men. This includes systemic sclerosis or scleroderma, rheumatoid arthritis, systemic lupus erythematosus, Sjögren syndrome, and interstitial pneumonia.
Lymphocytic interstitial pneumonitis (LIP) occurs mostly among middle-aged women.
ILD in Hermansky-Pudlak syndrome is very rare but affects mainly women during childhood or between ages 30 and 40.
Unfortunately, research shows that men are more likely to receive earlier treatment for ILD than women because it takes longer to diagnose ILD in women. This delay in diagnosis and treatment impacts survival rates.
A new study in 2020 revealed that women with ILD are more likely to have successful pregnancies than originally expected. While there were some increases in symptoms during pregnancy, women with mild to moderate ILD didn’t have any long-term impact to the mother or child. Women with more severe ILD did have pregnancy and postpartum complications but their babies were healthy. The research concluded that, with close monitoring by a multidisciplinary team of physicians before, during, and after pregnancy, there was no need to terminate the pregnancy, the typical approach in the past.
Living with Interstitial Lung Disease Patient Education Guide
This 52-page guide explores every facet of ILD that you may encounter, from diagnosis and treatment to support and myths. With the most up-to-date information available, this guide will help you and your loved ones feel confident when making decisions about your diagnosis.