I received this as a bulletin from the National Invisible Illness's myspace page. I know there are many of you with lung issues, and I thought I would pass this along, seeing how I've never heard of it either. Of course on the bulletin, there was a picture showing what the disease looks like in the lungs, but I can't get it to post here. Sorry! here is the myspace page: www.myspace.com/Hope4Lam
Hi Everyone,
My name is June. I'm 35 years old and I was recently diagnosed with a rare,progressive,fatal lung disease I had never ever heard of.
In fact, not many people have. In September of 2006 After a catscan of my chest I was diagnosed with the beginning of Emphysema.It was misdiagnosed as it often is.I was also told prior I had Asthma, and Chronic Bronchitis. The disease I have is called Lymphangioleiomyomatosis. also known as "Lam" and as of yet there is no cure. Lymphangioleiomyomatosis is pronounced lim-fan-gee-o-ly-o-my-o-ma-to-sis. "Lymph" and "angio" refer to the lymph and blood vessels, "Leiomy" means smooth muscle, and "oma" is a tumor. The last part "tosis" refers to a disease condition. I have 25-30 cysts in my lungs. At times I get very tired.I cough alot and am short of breath most of the time.
My recent catscan is now much worse. Along with all the cysts I have multiple "nodules" in both lungs. The disease has progressed. LAM is a metastatic disease affecting the lungs, the kidneys, the lymphatic system, and at times, the brain. LAM is fatal in the lungs as thin-walled cysts progressively destroy healthy lung tissue.
There is no effective treatment and no cure. It kills women from all races, class backgrounds and countries by suffocating them to death. The Life expectancy for someone with Lam is 7-10 years. Time is running out for me and other woman with Lam. I need YOUR help. I've turned to myspace to raise awareness and try and educate the community so nobody else goes undiagnosed or is misdiagnosed. Doctors say LAM affects 1 in 3 million people. I don't believe this. How many people are diagnosed with Asthma, Chronic Bronchitis, Or Emphysema? ALOT!
For more information on how you can help please see my blog titled "How you can help" The June Christine Lembo Lam Foundation is committed to funding science to find a cure,educating the medical and lay communities and raising awareness of this disease that so few physicians have heard of. and making sure every physician knows what Lam is..
Bump! I want to make sure people see this!!!
Am bumping....important topic.
Copyright ArthritisInsight.com