February 28, 2018

Rare Diseases Day

As part of International Rare Diseases Day, Lung Foundation Australia is calling for your help to turn the spotlight on rare lung disease in children, Idiopathic Pulmonary Fibrosis (IPF) and Pulmonary Arterial Hypertension (PAH).

Check out our resources below and follow us on Facebook or Twitter and share our posts to help raise awareness this #RareDiseasesDay.

Rare lung disease in children

In Australia there is currently very limited, if any, information, support, treatment and research for rare lung diseases in children, often leaving parents feeling isolated, helpless and with heightened uncertainty and despair for the future.

Our Young Lungs Program is working to provide information and support, raise awareness, and advocate for parents who have a child with a rare lung condition, throughout Australia and New Zealand.

Leo and Misty’s story

4-year-old Leo knows he has a lung disease but for him it’s just words. At just a few months old he was diagnosed with Surfactant Protein C Deficiency (SP-C), a rare lung disease. Leo has been off oxygen for almost two years however his future is still uncertain and everyday activities such as running around with his friends are a challenge for him. He runs out of breath and tires easily. For Leo’s mum, Misty, it has been a difficult and isolating journey. Watch video.

Idiopathic Pulmonary Fibrosis

Idiopathic Pulmonary Fibrosis (IPF) is a debilitating and life-limiting disease that causes irreversible scarring of the tissue deep in your lungs. The scarring continues to worsen over time, making it difficult to breathe. The biggest challenge is accurately diagnosing IPF, because many of its symptoms are similar to other lung diseases. Lung Foundation Australia has developed a new resource to support awareness of the signs, symptoms and support available for IPF. Download IPF fact sheet.

Pulmonary Arterial Hypertension

Pulmonary Arterial Hypertension (PAH) is a rare and progressive disease caused by narrowing of the arteries in the lungs. This causes high blood pressure in the lungs known as pulmonary hypertension. Our PAH infographic provides a quick and easy guide to identify the signs, symptoms and support available for this debilitating disease. Download infographic.