The LAM Foundation…dedicated to the relentless pursuit of a treatment and cure.
The LAM Foundation brings hope to women with LAM everywhere. LAM, or lymphangioleiomyomatosis, is a rare, frequently fatal lung disease that affects only women, usually between puberty and menopause.
Sue Byrnes, Director, started the Foundation in 1995 when her daughter, Andrea, was diagnosed with LAM. At that time, there was no support, no research…no hope. The LAM Foundation exists to: offer education, support and hope to women with LAM in the United States and around the world; raise awareness to identify the suspected 250,000 undiagnosed women; and fund research in an effort to find a treatment and a cure. Important advances by LAM Foundation scientists have provided the scientific basis for the first-ever LAM treatment trial, called The SMILES Trial.
MORE FACTS ABOUT LAM:
• Women often go undiagnosed for years, and are frequently misdiagnosed with asthma or emphysema.
• The discovery of a genetic link between LAM and another rare disease, tuberous sclerosis, has led scientists to estimate that more than 250,000 women worldwide have LAM.
• Symptoms may include shortness of breath, persistent cough, chest pain, unexplained fatigue and a collapsed lung.
• 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.
• Approximately 50% of women with LAM have an angiomyolipoma, a benign kidney tumor.
• The disease results in progressive destruction of healthy lung tissue caused by abnormal growth of smooth muscle and cyst formation.
• Lung capacity progressively declines, often resulting in the need for oxygen therapy and though highly risky, lung transplantation.
• 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 proven to be effective.
Remarkable progress has been made, but the battle is still raging. We work with urgency to find an effective treatment, and more importantly, a cure.
By its very existence, the Foundation has given us hope. It has given us a face, a voice.
We are not alone anymore, and I am grateful. ~LAM Patient, Betty Kaplan
FOR MORE INFORMATION, PLEASE CONTACT:
The LAM Foundation
Sue Byrnes, Director
10105 Beacon Hills Drive, Cincinnati, OH 45241
Phone: (513) 777-6889
Fax: (513) 777-4109