My story

Photo of Iris

I experienced shortness of breath for several months before my LAM diagnosis. I later started to have major symptoms which included a dry cough, dyspnoea and a high fever. I was hospitalised for X-rays and a CT scan. The doctors saw that my lungs were filled with cysts and a bronchoscopy revealed LAM cells in my tissues.

Before receiving my final diagnosis in 2007, I had a lot of panic attacks as I did not know what was wrong with me. Finding out that I had LAM was frightening but, in a way, it was good to finally have an explanation for my symptoms. I was surprised as I had always led a very active lifestyle and have never smoked. I felt despair but tried to find a solution. I told myself that just because there is currently no cure for LAM, it does not mean that there will not be in the future.

I founded LAM Italia and the European LAM Federation to try and promote research and therapy for the disease. After my diagnosis, I still experienced cough and fatigue and was quite weak. I tried to improve my symptoms by taking care of my body: eating a healthier diet and doing mild exercise like yoga and lifting light weights. I was also prescribed bronchodilators.

Since my diagnosis, my condition has been relatively stable and I have not experienced the more severe effects, like pneumothorax.

I have worked hard to manage my negative state of mind and I have spoken to many women who get stuck in a vicious cycle of fear and panic which can stop them from being able to face everyday life. The first thing I tell someone newly diagnosed with LAM is to make sure they have ongoing support from a national centre with experience of LAM and I also try to give them a message of hope.