LARA - LAM Australasia Research Alliance. Seeking a cure for LAM (Lymphangioleiomyomatosis)

LARA'S Objectives

  • > Education
    Promoting knowledge and awareness of LAM to practitioners and women with LAM
  • > Information
    Providing information for and about women with LAM
  • > Support
    Providing for the needs of women with LAM
  • > Diagnosis
    Facilitating diagnosis by raising awareness of LAM
  • > Research
    Fostering and funding research to discover the cause, cure and prevention of LAM
  • > Fundraising
    Raising money to support our objectives
  • > Networking
    Collaborating with countries in our region by exchanging information

Contact Us

LAM Australasia Research Alliance

4/209 Oxford Street
Bondi Junction 2022

T (03) 9751 0070
E admin@lara.org.au

PO Box 636 Bondi Junction NSW 1355
Australia



If you have been diagnosed as having LAM, you are probably confused, bewildered, and perhaps even angry. How could you have such a rare disease?!  You may feel like you're 1 in a million. Your diagnosis may follow years of unexplained breathlessness, a persistent cough or chest pain. You may have been told you had asthma, bronchitis, emphysema or depression. It probably didn’t make sense until you found out about LAM.

Don’t believe everything you read about LAM. A lot of information is outdated.  Current thinking is that LAM comes in different forms. Sometimes it develops slowly without any noticeable symptoms.  The statistics are generalisations.  Just as every woman is different, every case of LAM is different.

LAM symptoms are often misdiagnosed and confused with asthma, emphysema or depression. Many women will never find out they have LAM.  As yet there is no cure, but various ways of treating LAM are being trialled with some signs of success. Researchers are hopeful that studies of LAM and other diseases will result in a way of stopping LAM in its tracks.


Acknowledgements
Webhead
Karen Riethmuller, Graphic Designer of KGR Design
LARA’s Auditor Allan Hughan
LARA’s Public Officer, Solicitor Peter Kelso
Sprinting Printing
all of whom generously support LARA’s fund-raising efforts.


This site is currently being refurbished.  We welcome your suggestions for ways of improving it.  Please use the CONTACT form accessible from the menu bar.

What to do if you think you might have LAM

  1. Educate your doctor. Most doctors, even respiratory physicians, have never come across LAM and know little about the disease. Print information page for your GP
  2. See our list, which is gradually being extended. Ask your GP to refer you to a respiratory physician with recent experience in treating LAM.
  3. If you haven't already done lung function tests, including DLCO, arrange these through your GP.
  4. Contact LARA to register your name (confidentially), request a call from someone who is living with LAM, and/or to receive our occasional newsletter, LARA Links.
  5. Keep as positive, active and fit as you can. (See IMPORTANCE OF PULMONARY REHABILITATION)
Welcome to the first edition of the LARA newsletter. Apart from letting you know what we are doing, LARA Links aims to connect you to LAM news and women with LAM all over the world. Just click ...

Newly married and starting out on her career, Mara Rezo thought she had the world at her feet. However, at 25 a diagnosis of LAM sa...

Helping to determine LARA's forthcoming research projects, members of LARA's Medical and Scientific Advisory Board, Prof Judith Black AO and Prof David Sonnabend of the University of...

Further information on LAM and  available treatments In a CT scan of the lungs of a LAM patient, the area between the alveoli are much thicker than normal and cysts have formed. There are few ...

Tuberous Sclerosis and relationship with LAM Tuberous Sclerosis (TSC) is a genetic disorder in which there is an abnormal copy of the gene in every cell of the body. Something will then inactiva...