Young Lungs Awareness Week

To mark the inaugural Young Lungs Awareness Week (10-16 August), Lung Foundation Australia and families across the country are calling on the community to show they care for rare lung disease in children by joining a new social media movement #YoungLungsWeek.

Care for rare

With very little known about their condition, the cause or treatment options, children living with a rare lung disease and their families face a range of challenges and an uncertain future. The journey to diagnosis is long and frightening, and even with a diagnosis, there are endless unanswered questions. 

For some, months and even years can pass before a diagnosis is made. From the first sign something might be wrong, families are left to navigate the complexities of the health system alone and there are very few support services and systems in place to help families cope with the unique challenges they face each day.  

Australian children with rare lung disease deserve a brighter future. As part of this inaugural week families around the nation are coming together to show they care for rare lung disease in children by joining the social media movement #YoungLungsWeek. You can get involved by sharing the message on your social media channels using the hashtag and donating to help ensure every family has access to valuable information and resources.

Rare is actually rare – the medical professionals are learning about it, there’s limited information and that makes it really hard for families to get the financial support and emotional support that they need.

Bec, mother to Bridgette who lives with a rare lung disease

Rare but not alone

For a parent or carer, it can be a very challenging and emotional time when your child is diagnosed with a rare lung condition. Navigating a rare illness can be incredibly overwhelming and isolating and it can feel like no one understands what you’re going through. The day-to-day challenges have a significant impact on you, your child and your whole family.

While family and friends are supportive, finding people who truly understand what you are experiencing can be challenging.  Despite the seemingly insurmountable challenges, you are not alone. Lung Foundation Australia is here to connect you to information and resources, and a community of families who are ready to welcome you with open arms. If you’re a parent or carer of a child with rare lung disease and would like to find out more about how we can help, please complete the form below and a member of the Lung Foundation Australia team will be in touch.

Resources for Childhood Interstitial Lung Disease

Childhood Interstitial Lung Disease (chILD) is a broad term for over 200 rare lung diseases that can affect infants, children and adolescents. There are many similarities amongst the different types of chILD and symptoms may be very similar. Unfortunately, information and research about this group of rare lung diseases is scarce. With the support of paediatric respiratory specialists, Lung Foundation Australia developed an extensive online resource to arm parents and carers of children living with chILD with tools, resources and information to navigate the complexities of the healthcare system and nurture the physical and emotional wellbeing of the whole family.

At times we worry what the future may hold for Sarah but for now we delight in listening to her singing in the shower and watching her scale a wall with ease at rock climbing. 

Susanna, mother to Sarah who lives with a rare lung disease