About LAM

Significant strides have been made in understanding, diagnosing and treating symptoms and complications of LAM in the last 10 years.  Still, there is an urgent need to:

• Increase awareness about LAM in the medical and lay communities;
• Ensure that women get a proper diagnosis;
• Dedicate research funding to find a safe and effective treatment for LAM and ultimately, a cure.
  

Facts About Lymphangioleiomyomatosis (LAM)

• Symptoms may include shortness of breath, collapsed lung, chest pain, cough, or fatigue.
  
• Up to 50% of women with LAM have a benign kidney tumor called angiomyolipoma.
  
• LAM usually does not appear on an x-ray. A high-resolution CT scan of the chest, and often the abdominal area, is required for accurate diagnosis.
  
• LAM results in progressive destruction of healthy lung tissue caused by cyst formation and abnormal growth of smooth muscle cells, not usually found in the lungs.
  
• Lung capacity progressively declines, resulting in the need for oxygen therapy.
  
• Women often go undiagnosed for years, and are frequently misdiagnosed with asthma, bronchitis, or emphysema.
  
• The discovery of a genetic link between LAM and tuberous sclerosis (TS) leads scientists to estimate that more than 250,000 women worldwide are unaware they have LAM.
  
• Since LAM occurs almost exclusively in women, the disease is thought to be hormonally-related.
  
• Many doctors think pregnancy accelerates the disease

• There is no cure and no treatment that has proven to be effective, but treatment trials are underway.

Learn more about the symptoms, cause and treatment of LAM.

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