Living with LAM - LAM Action

[@maryuggen3857]

I am 77 and was diagnosed in 2010 at the age of 65. I do believe I had it in 1991. I am so happy it took that long to diagnose it. My indicator was a kidney tumor, an AML that was causing anemia. I am at this point very stable.

[@marilyngatson2289]

Did you guys test positive for TSC2? This is great information. I had lung surgery in 2019 for blood clots in .y lungs but have never completely regained back to normal breathing or shortness of breath when active. I just genetic testing done and was told I tested positive for TSC2 and need to get tested for LAM.

[@swapnilbranwal9152]

i need your help in diagnosing LAM recently found in my wife

[@mm0901]

Hello, I don’t know if you’re still active regarding research or involvement with LAM patients but I was recently diagnosed with LAM during a routine hysterectomy last year- I am older than most people at diagnosis as I am 54- it was found in my uterus and abdomen and as of now I do not have any evidence of it being in my lungs. I have read many accounts of LAM starting in the uterus or found during routine hysterectomies like mine. I had strange uterine symptoms for years and years but I’m still not sure if they were attributed to LAM or the endometriosis that was found during my hysterectomy. I’m usually don’t like posting personal stuff but I am posting this so that maybe it can help someone or offer some clues as to the origins of the disease. I know this is an older video and much progress has been made since then but I feel like there are still so many unanswered questions regarding this rare disease.

[@danielleg2616]

Sirolimis not working for me

[@apb007]

I might have this