Your QuestionPlease send me any information regarding treatment and/or clinical trials for this rare disease.
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More than 1 out of every 3 people with LAM also develops growths called angiomyolipomas, or AMLs, in their kidneys. People with LAM also may develop:
There are two forms of LAM:
Since LAM occurs almost exclusively in women of reproductive age, researchers believe the hormone estrogen might be involved in the abnormal muscle cell growth that characterizes the disease. Although there is no direct evidence that there is a relationship between estrogen and LAM, the treatment of LAM has focused on reducing the production or effects of estrogen. This could include estrogen or other hormone suppressing drugs. Additionally, doctors believe pregnancy may accelerate the progression of LAM. Women with LAM are urged to speak with a health care professional before getting pregnant.
The LAM Foundation supports past an ongoing research for the causes and treatment of LAM. The LAM Foundation continues to support clinical trials to search for safe and effective treatments.
The National Institutes of Health (NIH) established the Rare Diseases Clinical Research Network (RDCRN) to facilitate collaboration among experts in many different types of rare diseases. The goal of the network is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment. The RDCRN consists of ten consortia and a Data and Technology Coordinating Center (DTCC). One of these consortia is the Rare Lung Diseases Consortium (RLDC), a network of cooperating clinical centers and patient support organizations that are working with the National Institutes of Health (NIH) in a collaborative network whose novel structure is designed to accelerate clinical research and improve the delivery of medical care to individuals affected by rare lung diseases. To join the Contact Registry for LAM, click here.
- What is LAM?. National Heart Lung and Blood Institute (NHLBI). December 26, 2013; http://www.nhlbi.nih.gov/health/health-topics/topics/lam/. Accessed 7/21/2014.
- How Is LAM Treated?. National Heart Lung and Blood Institute (NHLBI). December 26, 2013; http://www.nhlbi.nih.gov/health/health-topics/topics/lam/treatment.html. Accessed 7/21/2014.
- Treating LAM. The LAM Foundation. 2014; http://www.thelamfoundation.org/lam-treatment. Accessed 7/21/2014.