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 For me LAM has not been anything like as serious as I feared when looking at the scary, out of date Wikipedia description in my GP’s surgery on the day I received my diagnosis.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.