Extraordinary Webisodes Highlight Rare Disease

FOR IMMEDIATE RELEASE: 29 December 2011

Extraordinary Webisodes Highlight Rare Disease

A series of ground breaking video webisodes has been released by New Zealanders involved in the international bid to find a cure for the rare lung disease Lymphangioleiomyomatosis ( LAM), a progressive fatal condition affecting women in the prime of their lives.

Released by the New Zealand LAM Charitable Trust , the webisodes are a series of short video clips which feature New Zealand LAM patients sharing compelling stories of how they are facing up to the challenge of living with the rare condition, while holding out hopes for a breakthrough in treatment.

The mother of one of the patients, LAM Trust director Bronwyn Gray, reveals in heart breaking detail the day in 1997 when her daughter was diagnosed with the disease, which at that time even lung specialists knew virtually nothing about.

“She was given a death sentence but we didn’t know what it meant. I had two choices – I can either sit in the corner and wait for my daughter to die, or we can try to do something,” the Auckland woman recounts in her opening webisode. Gray has since galvanised research into LAM, spending the last decade bringing together families, patients, researchers and clinical specialists around the world, in the search for answers to the mystery that is Lymphangioleiomyomatosis.

One of the key people she involved early on has become New Zealand’s leading LAM research scientist. Professor Merv Merrilees, of Auckland University, features in the webisodes discussing his involvement in global advances in understanding LAM and the progress towards a cure. Merrilees also reveals how investigations into a rare condition like LAM, can help researchers studying more common disorders such as heart disease, arthritis and cancer.

Auckland GP Dr Christine Forster highlights the problems facing doctors when presented with a patient suffering from LAM symptoms, which is often misdiagnosed as asthma.
“In general practice, cough and wheeze are our bread and butter,” Forster explains in her webisode, “but it’s really important to do anything to get information about LAM to GPs around the country about how these patients might present.”

The LAM Trust, which supports patients in New Zealand and raises funds for research, decided to make the webisodes to enhance awareness of the disease and to show the full picture of New Zealanders involvement in the global fight against LAM. The Trust successfully applied to Pub Charity to fund the webisodes produced by Auckland’s Southern Moon Productions.

ENDS

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