My story

Photo of Gill

My first lung problem occurred in 1987, aged 22. My right lung collapsed immediately after a holiday trekking in the Himalayas. Over the next few weeks it collapsed twice more, so I had a pleurectomy, a surgical procedure to prevent further collapses.

However, I was only formally diagnosed with LAM five years later, in 1992, following tests after I had been coughing blood while swimming.

The diagnosis was devastating, particularly because very little information was available at that time. I was told that it was very rare; that I should not have children; that there was no treatment and no cure; and that the condition was likely to be fatal within 10 years! In 1995, I had further surgery - a pleurodesis - after my left lung collapsed. Doctors told me then that I might be a candidate for lung transplant in the future. Eventually, I had a single lung transplant in 2004. It has been very successful and I am now living a very full life.

In the years before my transplant, I found the psychological and emotional impact as hard to deal with as the physical symptoms. LAM affected both my work and family life; I had to change my role at work and adjust my career aspirations, and I was increasingly dependent on my husband and family, which as a very independent person I resented.

Emotional support is essential, so I was very relieved when support groups were set up in 1995 (the LAM Foundation [USA]) and 1997 (LAM Action [UK]). Talking to others, outside of your family, can help so much. I also found exercise really beneficial; it kept my lungs working as best they could and also helped to stave off depression and anxiety.

There have been amazing developments in the years since I was diagnosed, as so much more is known about LAM. The internet and social media have also helped in bringing women with LAM all over the world together to support each other.

The advice I would give to someone newly diagnosed is to remain hopeful - there has been a lot of progress, and drugs like sirolimus have slowed progression of the disease for many women. It is also clear that LAM affects different people to different degrees; many women have a milder form of the disease.

Finally, try not to worry now about what might happen in the future – be positive and make the most of your current health.