Why LAM?
In 2016, I developed pseudomonas aeruginosa in my lungs, which is a bacteria similar to pneumonia, due to bronchiectasis. For about a year, I was on and off antibiotics and ended up with a pic line in my arm for 2 weeks to attempt to clear the infection, which was very difficult to overcome. My friend, Patricia, who was diagnosed with LAM disease and is very knowledgeable about the lungs, offered good advice to help me clear my lungs. After learning just a little about LAM, it really put into perspective what I was dealing with compared to what those with LAM are dealing with. Even though I eventually put the infection behind me, I am still very cognizant about the health of my lungs. With just a tiny inkling of what those with LAM might be dealing with, I want to raise money to help my friend and all those fighting the disease.
For more info about LAM, please visit the official site via the link to the left
What is LAM?
Lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-MI-o-ma-TO-sis), or LAM, is a rare lung disease that affects women almost exclusively. LAM is characterized by an abnormal growth of smooth muscle cells, especially in the lungs, lymphatic system, and kidneys. Abnormal growth of these cells can lead to loss of lung function, accumulation of lymph rich fluid in the chest and abdomen, and growth of benign tumors in the kidneys.
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It is estimated that for every million women, three to seven will have LAM. However, a 2023 study of four European countries suggests the prevalence is at least 21 cases per million women– substantially higher than prior estimates. All races are affected and women with LAM have been identified in more than sixty countries. The average age of women at the time of diagnosis is approximately 35 years old. Most women with LAM have had symptoms for several years before ultimately being diagnosed.
When you breathe, oxygen passes through the airways to tiny air sacs (alveoli) in the lungs where oxygen transfers into the blood through tiny blood vessels called capillaries. The LAM cells (abnormal smooth muscle cells) cause blockage of the small airways and damage the lung tissue, reducing airflow and oxygen absorption in the blood. Scientists are working to understand the mechanisms at work in the lung that cause formation of cysts and lung destruction.
LAM’s progression is different for everyone. For some women, the disease progresses slowly, while for others, it advances rapidly. In all cases, lung function tends to decrease over time. Many LAM patients will, at some point, require oxygen therapy. The median survival of patients with LAM is estimated at more than 20 years after diagnosis, with a transplant-free survival probability of 94% at 5 years, 85% at 10 years, 75% at 15 years, and 64% at 20 years.
While there is currently no cure for LAM, clinicians and patients have access to therapies and diagnostic tests that improve quality of life and reduce or delay the need for invasive surgical interventions. Many of these advances have occurred in the last 15 years, thanks to the work of The LAM Foundation and a global network of dedicated scientists and clinicians.
The funds raised via our 'RAAM for LAM' fundraiser will help contribute to this valuable work being done by The LAM Foundation to develop improved therapies and ultimately to find a cure.