Signs & Symptoms of Lymphangioleiomyomatosis (LAM)

The most common signs and symptoms of LAM are:

  • Shortness of breath, especially following activity
  • Persistent cough, sometimes with bloody phlegm
  • Chest pain, often, but not always, due to collapsed lung
  • Abdominal discomfort or flank pain

Complications that may develop as a result of LAM

Pnuemothorax (noo-mo-THOR-aks) - Many women with LAM develop a pneumothorax (collapsed lung) at some point. Sometimes one lung will collapse over and over again. Both lungs can collapse too. This is a serious condition that can be life threatening. A lung that is only partly collapsed may slowly re-expand without treatment, but treatment is often require.

Pleural effusion - This condition can occur if bodily fluids collect in the space between the lung and the chest wall. Often the fluid contains a milky substance called chyle. The excess fluid in the chest may cause shortness of breath because the lung has less room to expand.

Angiomyolipomas (AMLs) - Nearly half of the women with LAM develop these benign growths in their kidneys. AMLs often do not cause any symptoms. However multiple AMLs or large AMLs may cause bleeding in the kidneys, resulting in flank pain. AMLs that cause bleeding may be life threatening.

Enlarged lymph nodes - These usually occur in the abdomen or the chest and may cause nausea, bloating, or abdominal pain. Very rarely, enlarged lymph nodes may occur in locations where they can be felt, such as the neck or under the arms

Many women with LAM also have:

  • Blood or lymph in their sputum
  • Blood in their urine
  • Enlarged lymph nodes
  • Abdominal swelling

Other diseases can cause many of these signs and symptoms and complications, so it is important that you see a doctor.

Who is at Risk for having LAM?

With the exception of rare cases, sporadic LAM only affects women. More than 70 percent of women who develop LAM are between the ages of 20 and 40 when they first start experiencing symptoms.

There are an estimated 250,000 women worldwide with both Tuberous Sclerosis Complex with pulmonary LAM. Women of all races are affected.

Today, more than 800 women in the United States have been diagnosed with either LAM alone or LAM with Tuberous Sclerosis Complex (TSC). This estimation is complicated by the fact that LAM is often misdiagnosed at first as another more common lung disease, such as emphysema, asthma, or bronchitis. LAM is also commonly under-diagnosed because it requires a High Resolution CT Scan and/or lung biopsy to make a definitive diagnosis.

Since LAM affects about 3 out of every 10 women with TSC, there may be as many as 10,000 women in the United States who have TSC and undiagnosed LAM. Many, but not all of these women, may have milder cases of LAM do not cause symptoms. Not all TSC patients who have LAM experience lung problems.

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