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.
I used to work as a Human Resources consultant, mainly recruiting and training people in many industries all over Great Britain. In my leisure time I’ve always been very active and since retiring from paid work I spend even more time outdoors, having kept and ridden horses for many years. In 2014 I was in my early fifties and started to notice that I was getting unusually out of breath when speaking for any length of time at work and during dressage training. I was otherwise well, very slim and fit so I saw my GP. He suspected late onset asthma, not unreasonably given how dusty horses and hay are, but I did not respond to treatment. Eventually I saw a consultant in respiratory medicine privately and a CT scan of my lungs showed cysts. He had never seen a case of LAM before and told me it was nothing sinister and nothing needed to be done. Fortunately, a member of his team then recognised what the scan showed although there was a delay in communicating that to me. I only learned of my diagnosis when I was refused life insurance and went to my GP to ask why!
In the meantime, though, a physiotherapist had helped me to work on my breathing technique, which was very helpful and reduced my symptoms somewhat.
A subsequent scan showed that I had three angiomyolipomas on my right kidney, the largest one was 6.2cm across. I had been experiencing discomfort in that area but had self-diagnosed a muscle strain. I had these surgically removed and for me, this has been the most significant effect of LAM. I have been lucky in that my lung function has remained good and stable without medication, also that I have kept 95% of that kidney which continues to function normally. However the surgery required removal of a rib to access the kidney. This was extremely painful at the time and has left me with a lot of discomfort and relative weakness which is frustrating. I was not referred to the UK LAM Centre until after this had been carried out and I do wonder whether my decision to have surgery would have been different if I’d been able to discuss the problem with an expert in this condition. I was certainly never told beforehand that there may have been a medical rather than surgical solution.
But in spite of my LAM, now in my sixties I’m still very active. I still keep and ride horses, just less energetically and still do a lot of physical work around our farm. For me LAM has not been anything like as serious as I feared when looking at the scary, out of date Wikipedia description in my GP’s surgery on the day I received my diagnosis. I’m hugely reassured to be under the care of Professor Johnson and the UK LAM Centre though and confident that if anything changes for me I will receive the best possible care. I’m very grateful for the advancements in understanding and treatment of this condition that have been made possible by such diligent research, also for the support and friendship of everyone at LAM Action.
Harriet has only recently discovered that she has LAM and talks frankly about the experiences that led up to her diagnosis and how a visit to a LAM Action meeting helped her to come to terms with the disease.
Leanne was diagnosed with LAM in 2013 and since that time has married and had three children. She talks about her experience and some of the challenges she has faced.
I was diagnosed with LAM on Valentine’s Day 2013 when I suffered a double lung collapse whilst visiting a relative at the Queen Elizabeth Hospital in Birmingham. I had suffered several lung collapses prior to diagnosis. My LAM was diagnosed via a CT scan, which showed that my lungs were absolutely covered with cysts.
When I received my diagnosis, I was absolutely devastated. At the time, a google search of LAM showed a life expectancy of roughly 8-10 years. As I was just 30, it was incredibly difficult and upsetting to absorb both personally and for my family. The medical professionals who cared for me around the time of my diagnosis knew virtually nothing about LAM. However, I was referred to Professor Johnson at the LAM Centre in Nottingham shortly afterwards and finally found somebody who knew what LAM was and who was going to help me. Professor Johnson also reassured me that I had a much better life expectancy than google had led me to believe.
I continued to suffer with collapsed lungs on a fairly frequent basis. With no pre-warning before an episode, it was proving pretty tricky to try and carry on with life as normal. In April 2014, just over a year after diagnosis, I suffered a particularly bad lung collapse. This happened to be just two months before my fiancé and I were due to marry in the South of France. Well, a collapsed lung occurring right before my wedding was simply not on my agenda! I tried to carry on as normal for two weeks but eventually underwent a pleurodesis, which essentially involved “gluing” my right lung to my rib cage to prevent it from collapsing in the future.
Normal recovery from this operation is around three to four months, but I needed to recover in six weeks. I did manage it, and the day of the wedding was the best day of my husband’s and my life, and was made so much more special after the trauma we had been through to reach that point.
My husband and I conceived our daughter Isemay shortly after marrying. A couple of years later I gave birth to our son Oliver, and in 2021 I gave birth to our son Harvey. Our children are our absolute world, our pride and joy and bring us so much happiness.
I’d always wanted a big family and when we conceived Isemay, my husband and I hadn’t considered whether LAM would be a factor in having children. Truthfully, my first pregnancy exacerbated my LAM and my lung function declined. Pregnancy is a very personal decision for every woman with LAM, and one that should be discussed with her doctor. Despite pregnancy causing some deterioration in my lung function, I have no regrets and I feel so incredibly blessed and lucky to have my family.
I might not be able to run the Birmingham Half Marathon or carry a load of washing upstairs without getting breathless anymore, but I do push myself within the parameters that my LAM allows. I’ve taken up spin classes and power plates, and I’ve found that the short bursts of intense effort required for spin, with regular (albeit short) bursts of rest in between, is manageable. I’m so pleased to be able to get that adrenaline rush and release that exercise gives me.
I started taking the drug Rapamycin in July 2016. Although initially I experienced some unpleasant side effects, the drug so far seems to have halted my lung deterioration and things have thankfully now stabilised for me. Without research into LAM, we wouldn’t know that Rapamycin could help and my lungs would be getting steadily worse. Rapamycin is not a cure for LAM, but I hope that further research will find one. However, for now, Rapamycin has allowed me to enjoy raising my children and live my life as fully as possible. I feel much more confident about the future and look forward to seeing further advancements in LAM research.
LAM affects women differently, from their reaction to the diagnosis to the progression of the disease. Here are some different accounts of Living with LAM – the video was created in 2016.
