Both the lung condition and the kidney tumours seen in LAM can occur in patients with a disease called tuberous sclerosis. Tuberous sclerosis is generally associated with unusual skin changes, tumours in other organs and sometimes epilepsy (fits), and learning and behavioural problems. There is a very important difference between tuberous sclerosis and sporadic LAM which is that tuberous sclerosis is inherited whereas sporadic LAM is not inherited. Most women with LAM do not have tuberous sclerosis and when tuberous sclerosis is present it is usually obvious from childhood. Very occasionally patients with tuberous sclerosis have a limited form of the disease and few problems so diagnosis may be overlooked for a time. For these reasons some women with LAM may need tests to ensure they do not have a mild form of tuberous sclerosis in association with LAM.
Juliet Stevenson