What to do if you think you might have LAM

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 A lot of information is outdated.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.

5 Step Checklist

One: 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

Two: See our list, which is gradually being extended. Ask your GP to refer you to a respiratory physician with recent experience in treating LAM. Click here for a list of doctors with LAM expertise

Three: If you haven’t already done lung function tests, including DLCO, arrange these through your GP.

Four: Contact LAM Australia to register your name (confidentially), request a call from someone who is living with LAM, and/or to receive our occasional newsletter.

Five: Keep as positive, active and fit as you can.