Help us fund a cure for LAM

Donate nowWhat is LAM?The more money we raise, the more research we can fund. With government funding limited, researchers rely on private support. By making your fully tax deductible contribution to LARA, you will ensure the research momentum continues.

Every donation large or small gives hope to women living with LAM.

You can donate to LAM research in Australia by:

1. Making a payment directly into LARA’s ANZ account: LAM Australasia Research Alliance 012-055 4926 67193

2. Mailing a cheque to: LAM Australasia Research Alliance PO Box 636, Bondi Junction NSW 1355 Australia

3. Visiting www.lara.org.au for links to LARA’s Everyday Hero and PayPal

If you have any questions, please telephone LARA’s office on 02 9387 1899.

LAM is the short form of lymphangioleiomyomatosis (lim-FAN-gee-o-LYE-o-MY-o-ma-TO-sis)

LAM is a rare cystic lung disease unique to women. It can be inherited along with tuberous sclerosis, or may result from a random genetic mutation.

LAM is devastating. Sporadic LAM is unexpected, unpredictable and irreversible. Although women living with LAM usually look healthy, they struggle with declining lung function and other symptoms of varying type and severity. LAM typically strikes women in their 30s, making pregnancy inadvisable and life expectancy uncertain.

LAM is progressive. Acting like a cancer, mutant cells thought to originate in the uterus, metastasise to the lungs and other organs via the lymphatics. Air-filled cysts proliferate in the lungs. Smooth muscle cells replace the lining of the lungs. As breathing becomes increasingly difficult, some patients may become dependent on supplementary oxygen. Cysts and growths may develop in the kidneys and abdomen too. The rate and degree of progression vary.

There is no cure… yet. An effective, purpose-built LAM drug has yet to be developed. Following a comprehensive international trial of rapamycin, specialists have been prescribing versions of this drug with increasing confidence. Although in many cases the medication slows the disease process, it cannot stop it, nor can it repair damage already inflicted. In severe cases a double lung transplant is the only option. That’s why identifying a cure is vital. LAM Australasia Research Alliance Inc 9886298

ABN 1252 8919171.

Registered with the Australian Taxation Office as a deductible gift recipient.

Registered as a charity with the Australian Charities and Not-for-Profits Commission (ACNC).

High-resolution CT scan shows bilateral lung cysts (arrowed) distributed randomly throughout the lungs.

Living with LAMHelp us fund a cure for LAM

Find out more about women living with LAM at www.lara.org.auTogether we can conquer LAM

I was diagnosed with LAM in 1999 at age 50. My lung condition meant I could no longer fly. I felt like an old caged bird. Always slim and fit, I’d played competition tennis and practised yoga for over 30 years. Now I was increasingly breathless, needing supplementary oxygen every day. In 2010 and 2011 I was hospitalised in Brisbane several times.

Early in 2012, a family tragedy meant I had to fly to Melbourne to be with my daughter and her baby. As a result of the flight, I became very ill and was admitted to intensive care. My LAM

specialist prescribed rapamycin and a statin. I still rely on home oxygen, but I feel healthier and more positive. Now 64, I am on the list for a double lung transplant.

It was 2001 and I was 37. Breathless and coughing up blood, I had X-rays and a CT scan. They revealed I had LAM. I was told there was no cure and I had between one and 10 years to live. Shocked, I feared death. What was I to tell my loved ones? I had wanted a baby but, sadly, pregnancy and birth were considered too risky.

Fast forward 12 years. Now very short of breath, I can barely walk 10 metres without a break. Relying on oxygen to get me through bad days, I dread a heart attack whenever I do anything remotely active. In 2009 I was prescribed rapamycin to shrink the LAM-related tumours smothering my abdomen and bowel.

It succeeded. The drug has also worked its magic by curtailing my gurgling and coughing up phlegm and blood. Happy to still be alive, I try to make the most of each day.

Yasuko

“Every day I breathe out negative air and breathe in hope.”

Anna“How could a woman who lived a healthy life and never smoked be afflicted by this?”

My husband and I both face health challenges, but our native plant nursery sustains us. In 2010, while having radiation for breast cancer, I developed a recurrent cough and was increasingly breathless. When a lung function test revealed airway obstruction, my GP suggested I contact a respiratory specialist. He identified LAM from my CT scan and recommended consulting a LAM specialist.

The cancer treatment had been tough, but I got through it with the support of my husband, family and church community. I thought I’d cope better with the LAM diagnosis. However, I was just as devastated – crying uncontrollably, reluctant to face anyone, disinterested in food, and burdened by everyday tasks. Slowly I crawled out of the gloom by keeping things simple and finding beauty in the world and people around me. It has been inspirational to share experiences with other women living with LAM.

Marion“LAM chose me. I have to make the best of my life.”

Rushed to hospital with severe back pain in 2010, I was diagnosed with LAM and put on oxygen 24/7. I was 39, my baby was just three months old, and her brother nearly two. Although I had none of the usual LAM symptoms, I was told my case was severe and the only remedy was a double lung transplant. Noone at the hospital could answer our questions, so my partner and I anxiously searched the internet. We found LARA, a wonderful support group which has given me the courage to be strong, focused, and to live for the present. I’m lucky to have a loving, supportive partner, family, and friends.

I’ve returned to work part-time with supplementary oxygen. Yes, it’s a challenge; luckily I love being a social worker. I tell anyone who comments on my breathing apparatus that I am still me; it’s just that I need oxygen to breathe. I try to make the most of each day, enjoying my children and focusing on what is important!

Kate

“Each day is hard for me and I worry what the future holds. Will I see my children grow up?”

We need your help to fund research to develop effective treatments and a cure for LAM.

An irreversible lung disease, LAM typically strikes healthy women in their child-bearing years. Women like Anna, Marion, Yasuko and Kate struggle with the effects of LAM every day. The prospect of a cure gives them hope.

In the past decade scientists and clinicians have made huge strides in understanding and treating LAM. Further research depends on your financial assistance. have made huge strides in understanding and treating this disease.

Research gives hope to women living with LAM. The LAM Australasia Research Alliance (LARA) raises funds for urgent research into LAM. A not-for-profit, LARA is run entirely by volunteers. LARA has raised close to $500,000 for LAM research to date. Most funding has assisted the Woolcock Institute of Medical Research at the University of Sydney. Scientists at the Woolcock had a breakthrough of international significance when they identified lamstatin, a protein missing from the lung tissue of LAM patients. Further research is tracking the disease pathways of LAM, leading us closer to finding effective treatments. Scientific discoveries relating to LAM are also likely to contributing to our understanding of other diseases including cancer.

Knowledge is essential to treatment and diagnosis. Because it resembles other lung complaints, LAM is often misdiagnosed – sometimes for years. We are working to increase awareness and understanding of LAM in the medical profession.

Affirmative action counters helplessness. Living with a disease which is progressive and unpredictable is challenging physically and psychologically. LAM impacts on the women who develop the disease and their loved ones. Alleviating the isolation of this rare and debilitating disease, LARA provides a support network and encourages women to help how and when they can.