Lymphangioleiomyomatosis - LAM - never heard of this before but what a scary disease

They just reported on this disease on our local TV station.

http://www.geocities.com/HotSprings/2312/

"Lymphangioleiomyomatosis (LAM) is a progressive lung disease that strikes young women in the prime of their lives. The prevalence of the disease is not known but it has been estimated that there are a few hundred cases in the United States.


The disease is characterized by an unusual type of muscle cell that invades the tissue of the lungs, including the airways, and blood and lymph vessels. Over time, these muscle cells form into bundles and grow into the walls of the airways, causing them to become obstructed. Although these cells are not considered cancerous, they grow without the usual controls within the lungs. Over time, the muscle cells block the flow of air, blood, and lymph to and from the lungs, preventing the lungs from providing oxygen to the rest of the body.


Lymphangioleiomyomatosis is pronounced lim-fan-g-o-lie-o-my-o-ma-toe-sis. Lymph and angio refer to the lymph and blood vessels. Leiomyomatosis refers to the formation of the bundles of the unusual muscle cells.


Although there is no clear evidence for a hormonal abnormality, therapy has focused on estrogen reduction because of the population affected and includes tamoxifen therapy and progesterone therapy. Lung transplantation has become an established therapeutic option in patients with advanced disease. Recurrence of LAM has been reported in the transplanted lung of two patients raising questions about pathogenesis and suggesting a systemic component is involved.


The cause of LAM is not known. "

• Lymphangioleiomyomatosis - LAM - never heard of this before but what a scary disease - Only women get it.

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cigarette, or first hit of whatever.  I also think a lot of times "disease" is an excuse and not a real issue.   I come from a very long line of alcoholics on both sides of my family.  As as result I feel I have a predisposition to becoming an alcoholic, so I choose not to drink.   Alcoholism may be a disease in some people, but it is curable.  HIV/AIDS is a disease too that is 100% preventable.   I don't have a lot of sympathy for people who refuse to take responsibility for their actions and want to blame everyone else.  

fully believe it starts as something to pass the time or forget problems, but then the body becomes dependent and then it causes disease.

is a clotting disorder occasion by an abnormality of Factor 5, according to the dictator, but I cannot get a solid spelling of this disease.  Anyone out there heard of it?

Thanks!!!

I have just recently learned I have polycystic kidney disease (my mother died of kidney failure) and the cysts are on my right kidney, adrenal gland and on recent CT, (only two months from my first one), I have now developed cysts on my liver too. The kidney cysts are bleeding. :( I have daily right-sided aching and back pain. My right kidney is deformed and I have reflux on the right as well as kidney damage from childhood.

My whole illness started out about eight months ago as benign paroxysmal positional vertigo and it was horrible with nausea, anorexia due to that, and significant weight loss. I had two Epley maneuvers that corrected the vertigo. A CT of the abdomen and pelvis was done and that is when the first cysts on the kidney were discovered which I was told were not concerning in someone in their 50s. In the meantime, I had started eliminating a couple of my Rx meds and the nausea stopped, and so I felt they were the cause of my nausea which in a sense I feel could still be true but perhaps more due to not metabolizing the meds appropriately due to kidney and/or liver problems but I do not know that yet. I do not see a urologist until 09/07 and will find out more then.

It is my understanding that this is a hereditary/genetic disorder and there is no cure and progression to kidney failure is quite high by the time you are 60 and I am 52.

I was just wondering if anyone else has this or knows someone who does and what info they may be willing to share. 

Thanks so very much. :)

Okay, is there any chance that anything in our medical records is going to be correct, either done overseas, dictated by someone who has little grip of the language, perhaps transcribed by someone with even less of a grip, maybe corrected, but in the money crunching, I doubt that, probably never read by the physician and now you are telling me that the doc himself is typing this info directly.  I frankly cannot imagine this.  I cannot imagine they would want to type it.  They can't keep on track half the time just reading. 

I'm sure it happens - as Patti says - but personally I would have a very hard time putting something like that on a report I typed. It is the doctor's responsibility to review the report. If he/she chooses not to do that, that is also his/her responsibility. But if I type it on the report, that means I am aware that the doctor is not reviewing it, and I would be concerned that I could be drawn into a lawsuit if there was ever a problem with a report.

It's quite possible that would never happen, but it's also possible that Patti has just been lucky...............