Excellent video. I am 77 and was diagnosed with LAM at the age of 65 due to an AML of the kidney. I have been asthmatic since age 4 and thought my inability to breathe was due to that. In looking back, I think I actually started presenting symptoms in 1991 while I was in my late 40's. Since my diagnosis, I have remained quite stable.
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.
Excellent question! I would also like to know if any research has been done using THC or Cannibidiol? I know that CBD oil has had amazing results with treating other cancers and seizures.
I would like to know where I can find out if any research at all has been done using CBD oils? As it is such a rare disease, I'm having trouble finding any such research online. Please help. Thank you.
Excellent video. I am 77 and was diagnosed with LAM at the age of 65 due to an AML of the kidney. I have been asthmatic since age 4 and thought my inability to breathe was due to that. In looking back, I think I actually started presenting symptoms in 1991 while I was in my late 40's.
Since my diagnosis, I have remained quite stable.
Great to hear that you're doing well. What does the doctor tell you about the future?
Thank you for this info. My wife has 9 holes from this and will be visiting Brigham women’s hospital shortly to meet one of your specialist.
How is she doing now? Take care
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.
Deseo comunicarme a la fundación de lam soy una paciente q vive en Guatemala y fui diagnosticada hace poco me gustaría obtener información
have you had any results from Cannabinoids?
Excellent question! I would also like to know if any research has been done using THC or Cannibidiol? I know that CBD oil has had amazing results with treating other cancers and seizures.
I would like to know where I can find out if any research at all has been done using CBD oils? As it is such a rare disease, I'm having trouble finding any such research online. Please help. Thank you.