My name is Jo Pisani, and I’m 58 years old and live in London with my husband and 18-year-old daughter. After a long career in professional services that involved a lot of travel, I’m now semi-retired and work on the boards of medical charities and biotech companies.

In 2017, during a routine CT scan of my heart, I was diagnosed with LAM. I had been experiencing some breathlessness before the diagnosis, but I had attributed it to getting older and losing fitness. I was referred to a respiratory disease specialist, who, despite being a professor, had not seen a case of LAM in ten years. At the time, I was taking oral estrogen HRT following a hysterectomy in 2016. The specialist advised me to reduce my dose but not to stop completely. However, I wanted to learn more about LAM and its contraindications, so I reached out to LAM Action. One of our volunteers, Sarah Wood, was incredibly helpful and encouraged me to see Prof. Simon Johnson at the LAM Centre, a leading global specialist in the disease. Simon and his team advised me to stop taking oral estrogen immediately and prescribed a bronchodilator to help with my symptoms. I now have regular check-ups with Simon and his team, and I feel well-monitored and supported.

In 2018, I participated in an inhaled rapamycin trial run by a company in the US, which was made possible by my involvement with the LAM Centre.

In 2019, I took medical retirement due to LAM, but I’ve stayed active and focused on maintaining my fitness levels. I have osteopenia, so load-bearing exercise is essential for me. I enjoy playing tennis, practicing yoga, and seeing a personal trainer at the gym each week. I’m also a keen cyclist and enjoy long-distance rides. I’ll be riding in Ride London for LAM Action again this year, which I’ve done five times in the past. I have a few bikes, including some electric ones that help me tackle steep climbs without getting too breathless.

Although I sometimes forget that I have LAM, it has certainly changed my life. Since retiring, I’ve learned to pace myself better, reserving my energy for activities that I enjoy while also trying new hobbies. I’ve taken up singing again and love singing in choirs, as well as playing the saxophone, both of which have helped improve my breath control. I’ve also taken professional chef and wine courses and now volunteer at a homeless charity preparing three-course meals for 110 vulnerable people each lunchtime using surplus food from supermarkets.

I feel incredibly lucky to have been diagnosed early with LAM and to be closely monitored by an excellent clinical team. LAM Action has been a valuable support network for me, and I’m proud to be a trustee and supporter of the charity’s work. It provides essential support for women living with LAM while also generating funds for critical research into the disease and its treatments.

Link to my fundraising page for Ride London 2023