This Rare Disease Day (Saturday 28 February 2026), Lung Foundation Australia is putting a spotlight on lymphangioleiomyomatosis (LAM), a rare and progressive lung disease, that affects three to seven women per million.
Earlier this month, LAM Australia merged with Lung Foundation Australia, strengthening national care, advocacy and research for the LAM community, and giving people living with LAM a stronger, more visible voice within Australia’s leading lung health peak body.
Louise, who lives with her husband on Sydney’s Northern Beaches, was diagnosed with LAM after a 15-year journey to find answers.
“In 2004, I experienced a lung collapse which led to a pleurodesis procedure on my right lung. That moment marked the beginning of my journey towards understanding my health more deeply,” she said.
“It took 15 years to receive confirmation of LAM. While learning that I had a rare progressive lung condition without a cure was confronting, it was also clarifying. Finally having a name for what I had been experiencing brought a sense of validation and direction.
“Following my diagnosis, I became involved with the national LAM support charity which has been incredibly valuable. It has provided education, connection and a sense of community. It’s also helped me communicate openly with family and friends about what living with LAM means.”
Living with LAM has required significant adjustments for Louise.
“Some days are manageable, some are not. And some days simply getting through feels like an achievement,” she said.
“It means cancelling plans at the last minute. It means declining invitations when air quality is poor or when crowded spaces increase the risk of infection. It means carefully pacing every commitment to conserve energy to protect my health.
“Over time, friends and family can grow frustrated. Invitations can slow. Isolation can quietly set in.
“Living with LAM has meant stepping away from work I truly enjoyed and learning to pace myself carefully. It’s taught me to listen to my body, prioritise what matters most each day and celebrate what I can achieve.”
Despite these challenges, Louise was able to achieve a long career in business whilst also actively supporting others and taking the role of president and treasurer of the LAM Australia charity. By partnering with Lung Foundation Australia, she believes more people will benefit from the impact of greater exposure and understanding of LAM.
“It is genuinely exciting. Being part of the Lung Foundation Australia community means greater access to resources, integrated support, research advancement, and advocacy, all of which inspire hope for a brighter future for those living with LAM,” she said.
“To best support those living with LAM, remember that not all illnesses are visible. If someone trusts you enough to share their experience, believe them. Listen. Be patient. Be kind.
“On Rare Disease Day I hope we can raise awareness, foster understanding, and support research that brings real hope for the future.”
Louise is regularly monitored by a pulmonary specialist, and while treatment options are limited, she has embraced an active role in managing her health.
Lung Foundation Australia Chief Executive Officer, Mark Brooke, said Rare Disease Day is a key opportunity to recognise Australians living with rare lung disease.
“Louise’s story highlights both the resilience of people living with rare lung disease and the urgent need for greater awareness and earlier diagnosis,” Mr Brooke said.
“LAM is one of the rarest diseases, yet when considered alongside other rare lung diseases, it is clear that collectively this group represents a sizeable and often underserved patient community.
“As the leading lung health peak body in Australia, Lung Foundation Australia is committed to Healthy Lungs for All.
“Through research, support, and advocacy, we work alongside people living with lung disease to improve their quality of life, while also protecting the gift of breath for every Australian.
“Every person, no matter how rare their condition, deserves access to coordinated care, trusted information, and hope.”
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