Symptoms vary, but the most common are breathlessness and pneumothorax (lung collapse).
A pneumothorax refers to a collapse of one or both of the lungs, caused by air entering the pleural cavity. The pleural cavity is the space between your lungs and the chest wall.
Less common symptoms are cough, coughing up blood, benign kidney tumours (angiomyolipomas), which occur in about half of cases, and chylous effusions (when lymph that forms in the digestive system, called chyle, builds up in the thin cavity around your lungs and stops them expanding properly when you breathe). Fatigue is also very common in women with LAM.
The course of LAM varies between individuals, but there are ways to manage the symptoms.
There is a lot of research going on and the most significant areas of research are focusing on:
- Better tools to predict how LAM will develop - so healthcare professionals can know whether an individual is likely to remain stable or need treatment sooner rather than later. Various studies are looking for biomarkers (a biological marker in the blood that suggests that a person has a particular condition), to give information on how the condition is developing.
- Finding a cure - sirolimus prevents LAM from getting worse, but only works while you are taking the drug. If you stop taking it, your lung function will decline again. New treatments are currently being evaluated which include new drugs as well as research into combining sirolimus with other drugs to see if LAM cells can be killed, rather than just stopped from growing.
- Regenerative treatments - studies into regenerative treatments aim to mend the damaged lung tissue. This is still at a very early stage, and significant results are a long way off.
Due to advances in LAM research, living with the condition is very different to how it used to be.
As living with LAM is very different for every woman, you should not compare yourself with others.
Many women feel desperate and anxious when they first get their diagnosis. It can be helpful to make contact with others diagnosed with LAM to talk and share information and practical tips on what helps.
Find support organisations in your country.