How many women have LAM?
We have no proven statistics, but as of March 2015 we know of 104 women living with LAM in Australia. The LAM Foundation has 1300 US women on its registrar. As of 2012, 300,000 had been diagnosed with LAM/TS (LAM in association with Tuberous Sclerosis) worldwide and 12,000 with Sporadic LAM.
Do men get LAM?
Generally no. Only one case we know of has been reported.
Can LAM be passed on genetically?
Sporadic LAM is not inherited, but when associated with tuberous sclerosis, it can be.
How can I find out if my symptoms are LAM?
Ask your GP to organise one or more tests (see WHAT IS LAM)
What should I do if I seem to have LAM?
Ask your GP to refer you to a respiratory physician with expertise in treating LAM.
Is there a cure for LAM?
There is no cure at present, but researchers are working on finding one. Currently the ultimate treatment is a lung transplant.
Is LAM life-threatening?
Life is fatal. So is LAM. Whilst LAM can threaten quality of life, it is progressive and there are ways of dealing with it.
How can I keep my spirits up?
Suggestions include: yoga, meditation, therapeutic massage, Chigong, Tai Chi, painting, networking, helping with fundraising
What treatments are available
The most common treatment is with everolimus and sirolimus (rapamycin). For more serious cases, lung transplants have been proven successful and many woment here lived full lives past transplantations.