About Lymphangioleiomyomatosis (LAM)
Significant strides have been made in understanding, diagnosing and treating symptoms and complications of LAM. Still, there is an urgent need to:
- Increase awareness about LAM in the medical and lay communities;
- Ensure that women get an early and proper diagnosis;
- Dedicate research funding to find a safe and effective treatment for LAM, and ultimately, a cure.
Facts About LAM
- Symptoms may include shortness of breath, collapsed lung, chest pain, cough, and/or fatigue.
- Up to 40% of women with LAM have a benign kidney tumor called angiomyolipoma.
- LAM does not usually 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, sometimes resulting in the need for supplemental oxygen.
- 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 hormone-related.
- It is thought that pregnancy may accelerate the disease.