Worldwide LAM Awareness Day Date in the current year: June 1, 2026

Lymphangioleiomyomatosis (LAM) is a rare disease in which abnormal, smooth-muscle-like cells grow in the lungs, as well as sometimes in the lymphatic system and kidneys. Over time, these cells can damage lung tissue, creating small cysts that make it harder for oxygen to enter the bloodstream.

LAM is a genetic disease caused by a loss-of-function mutation in the TSC1 or TSC2 genes. It can be associated with tuberous sclerosis complex (TSC), a multisystem genetic disorder characterized by benign tumors in multiple organs, or occur on its own (sporadic LAM). Sporadic LAM is the more common form. Researchers also believe that sex hormones play a role in the development of LAM alongside the genetic component because the disease occurs almost exclusively in women and estrogen-containing medications are known to exacerbate it.

The first symptoms of LAM usually appear in a person’s early to mid-30s. These symptoms include shortness of breath, coughing (sometimes with blood), chest pain, abdominal bloating, and spontaneous pneumothorax (lung collapse). Some women have very mild symptoms, while others may develop pneumothorax from the beginning. Approximately 30% of patients with sporadic LAM and about 90% of patients with TSC-LAM develop benign kidney tumors called angiomyolipomas.

These early symptoms are similar to those of other lung diseases, including asthma, bronchitis, chronic obstructive pulmonary disease (COPD), and emphysema. Due to this similarity and the rarity of LAM, it usually takes three to five years after the onset of symptoms to diagnose LAM. The most accurate imaging test for diagnosing LAM is a high-resolution CT scan. The median survival rate for patients with LAM is estimated to be more than 20 years after diagnosis.

LAM is a progressive disease, meaning its symptoms worsen over time. About a decade after the onset of symptoms, many patients require supplemental oxygen. Patients in the late stages may require a lung transplant. Currently, there is no cure, so treatment focuses on slowing the disease’s progression, managing symptoms, and treating complications.

The primary medication used to treat LAM is sirolimus (rapamycin), which blocks the overactive mTOR pathway that drives LAM cell growth. Other treatments may include supplemental oxygen, bronchodilator inhalers, and pulmonary rehabilitation, which combines exercise, education, and breathing techniques to improve quality of life. Patients with large kidney tumors may require procedures such as cauterization or embolization, while patients with smaller tumors that do not cause symptoms usually require regular monitoring.

Worldwide LAM Awareness Day and Month were created to educate the public about the signs and symptoms of LAM and to raise funds to support patients with LAM and fund research into better therapies and, eventually, a cure.