My story

I was diagnosed with LAM in 2012, aged 45, following high temperature, severe pain in my left side and sickness. I also had an angiomyolipoma, which is a benign kidney tumour, and shortness of breath. I found it very difficult walking up hills and stairs and carrying heavy bags.

I received intravenous antibiotics as treatment and was given sirolimus in the following months. I was advised to walk daily and to watch my diet. I have also found it helpful to do Tai Chi and yoga which helps reduce my anxiety, which was particularly problematic when I was first diagnosed.

Today, I am affected mainly if I do too much one day and find that I am exhausted the next. It is all about finding balance.

My advice to other women with LAM is to take your time to let it sink in as it can feel very confusing at first. Try not to search the internet and learn about the disease by contacting a local group within your own country or neighbouring country for information.