Story
NEHI is a rare respiratory disorder that was first classified in 2005 and is part of a sub-group of Childhood Interstitial Lung Disease's (ChILD).
Currently, the cause of NEHI remains unclear. Clinical research suggests that NEHI is due to restriction of the distal airways leading to air trapping in the lungs. However, the mechanism of this is poorly understood. There is also a strong genetic basis for this disorder.
Children with NEHI present with common but challenging clinical features that are often misdiagnosed as more common lung diseases. These features include: respiratory distress, low levels of oxygen in the blood, failure to thrive, retractions, and a crackling sound upon inhalation observed with a stethoscope. Diagnosis is usually from clinical observation, CT scan (NEHI does have very specific imaging presentation), and in some cases lung biopsy.
NEHI is poorly understood and under-researched. Thank you for helping us create medical research for NEHI children.
Please check out the website: https://nehi.org.uk. Here you will find more info on NEHI and see some stories of just some of the incredible children affected by NEHI