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. Obviously, this could change as the disease progresses. 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 feel like there are still so many unanswered questions regarding this rare disease.
I also have lam, I have 28 per cent gas transfer and really struggle but in the UK I have never been offered oxygen to help me during exercise, I am worried I'm just getting left to get on with it and am not confident in my care
I’m sorry to hear this my dear, I’m having the same issue. This disease is so rare most pulmonologist don’t know anything much less treatment options for this. I’m in the process of getting a referral to specialist at Stanford. I’m not sure where there is a specialist in the UK, I’ll keep you in prayer and hopefully you will get the care you need , much love 💗
Hello, I am so sorry… I am 54 and just diagnosed as well. It’s very overwhelming to say the least. I have been told this is a rare disease and it’s even rarer to find it in women of our age. I was diagnosed with LAM during a routine hysterectomy last year- it was found in my uterus and abdomen and as of now I do not have any evidence of it being in my lungs. Obviously, this could change as the disease progresses. 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 feel like there are still so many unanswered questions regarding this rare disease. I wish you the best and hope that we both have many more decades on this planet🙏🏻
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. Obviously, this could change as the disease progresses. 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 feel like there are still so many unanswered questions regarding this rare disease.
I also have lam, I have 28 per cent gas transfer and really struggle but in the UK I have never been offered oxygen to help me during exercise, I am worried I'm just getting left to get on with it and am not confident in my care
I’m sorry to hear this my dear, I’m having the same issue. This disease is so rare most pulmonologist don’t know anything much less treatment options for this. I’m in the process of getting a referral to specialist at Stanford. I’m not sure where there is a specialist in the UK, I’ll keep you in prayer and hopefully you will get the care you need , much love 💗
I'm during the diagnosis..
I am 55 and just diagnosed with LAM
@laura Silveria I had never heard of the disease. Other than sharp pain in my chest now and then, I dont even have issues.
i’m so sorry, i hope you get better and recover soon
take care of yourself
Hello, I am so sorry… I am 54 and just diagnosed as well. It’s very overwhelming to say the least. I have been told this is a rare disease and it’s even rarer to find it in women of our age. I was diagnosed with LAM during a routine hysterectomy last year- it was found in my uterus and abdomen and as of now I do not have any evidence of it being in my lungs. Obviously, this could change as the disease progresses. 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 feel like there are still so many unanswered questions regarding this rare disease. I wish you the best and hope that we both have many more decades on this planet🙏🏻
@@mm0901 thank you and yes that is my prayer as well.
I have LAM too!
Boston turned down my wife for the treatment 😓
Am I the only male with LAM disease in the world?