the getting of "G"

living with a chronic lung condition isn't very g-lamourous.
i have lymphangioleiomyomatosis. Called LAM for short for obvious reasons. Uhuh - yes it did take about 3 weeks to learn how to pronounce this 26 letter word. something like this - lymph-ang-eeo-leo-myo-ma-tosis.
Oh, the privilege of having a weird disease. Firstly: i was lucky to have a reasonably rapid correct diagnosis. 2ndly: i was incredibly lucky to have a respiratory consultant with whom i established a fantastic rapport. Dr Charlie Gallagher of St. Vincents Private Consultants Clinic, Dublin Ireland.
3rdly: i was incredibly lucky to have a bolshie, questing spirit.
and 4thly: i'm even more lucky to have a more mild form of this sometimes fatal condition.
How does it work? Abnormal smooth muscle proliferation appears mostly in the lung tissues, sometimes the lymphatics and even more rarely in the abdomen. Sometimes there are non malignent lymphoma thingies in the kidneys. The smooth muscle cell eats away at the smallest airways in the lungs, destroying tissue and therefore severly inhibiting lung function.
Symptoms vary: shortness of breath, misdiagnosis of emphysema, lung collapses (pneumothorax), coughing up blood, extreme and chronic tiredness. Diagnosis includes ct scan.
Whoops - i have a 5th - i am still trucking on OK some 8 years after an initially extremely gloomy diagnosis. Whilst i think there have been one or two reported cases of men, LAM seems to confine its appearance to women. Cause is still unknown, management unknown, outcome definitely known but not one you'd like to own.
The best place to go for information, support, donations and advice is The Lam Foundation. This charitable foundation was established by Sue Byrnes, mother of Andrea a LAM patient.
Now you know why i insist getting that "g" into lam. Life is for g-eeing the lam!