Frequently Asked Questions About LAM

What is Lymphangioleiomyomatosis (LAM)?

LAM, or lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-MI-o-ma-TO-sis), is a rare lung disease.  The symptoms of LAM, which can include shortness of breath, lung collapse (pneumothorax), and pain or bleeding from a kidney angiomyolipoma, usually begin during the 20's and 30's.  LAM affects almost exclusively women. LAM almost never occurs in men.

In LAM, abnormal, smooth muscle-like cells begin to grow out of control in the tissues of the lungs, lymph nodes, lymphatic system and kidneys.

Over time, these cells destroy the normal lung tissue and block the flow of air. The LAM cells also reduce oxygen intake, preventing the lungs from providing oxygen to the rest of the body.

There are two forms of LAM: TSC-associated LAM and sporadic LAM.  LAM occurs in about 30-40% of women with tuberous sclerosis complex (TSC).  This is referred to as TSC-associated LAM.  LAM can also occur in women who do not have TSC.  This is referred to as sporadic LAM. 

What are angiomyolipomas?  Angiomyolipomas, which are benign blood vessel filled tumors, occur in both sporadic LAM and TSC-associated LAM. 

What is TSC?  TSC is a genetic disease that can affect the brain, heart, kidneys, skin, and lungs.  For more information about TSC, click HERE.  

More Frequently Asked Questions About LAM

How do I make an appointment at the Center for LAM Research and Clinical Care?

You can make an appointment to be seen in the Center for LAM Research and Clinical Care by calling Betsy Peters the LAM Nurse Coordinator at 617-525-9331.

What should I expect during my first visit to the Center for LAM Research and Clinical Care?

Once you arrive at Brigham and Women’s Hospital, you will meet with Betsy Peters, LAM Nurse Coordinator. Betsy will help orient you to the hospital and the LAM team. We will collect and review your medical records (including x-rays, CTs, and testing results) before your visit. You may be scheduled for pulmonary function testing (breathing tests), and/or imaging before you meeting with a LAM pulmonologist if you have not had these tests done previously. Once your testing is completed your pulmonologist will review your past history of medical problems, medications you are currently taking, and perform a comprehensive physical exam. He or she will then review all of your testing and consultations for an individualized care and treatment plan. This appointment is scheduled to take 40 minutes.

Is parking available?

Patient valet parking is available at 15 and 45 Francis Street. Click HERE for more information about parking.

What if I live outside of Boston and/or don’t want to change my pulmonologist?

The Center for LAM Research and Clinical Care can provide you with an expert consultation. Your local pulmonologist will continue to manage your care and we will work closely with them to help address any LAM specific issues.

What are my options for birth control?

Estrogen is thought to play a role in causing LAM. Many doctors will tell you to avoid taking estrogen containing contraception. There are alternatives to estrogen containing contraception. For more information you should speak with your doctor or gynecologist. The Center for LAM Research and Clinical Care works closely with our LAM Gynecologist to address issue such as these.

Is pregnancy safe for women with LAM?

If your lung function is normal, pregnancy may be an option. However, hormones during pregnancy might worsen your LAM. Therefore, you should discuss a possible pregnancy with both a pulmonologist who specializes in LAM and your obstetrician.

Adoption, gestational surrogacy and traditional surrogacy are some of the options that you may consider as alternatives to pregnancy if you are considering starting a family. The Center for LAM Research and Clinical Care coordinates with Reproductive Medicine to address these questions.

Is air travel safe for women with LAM?

You should check with your doctor before traveling by air or traveling to areas where medical attention isn't readily available. Also, talk to your doctor before traveling to places where the amount of oxygen in the air is low.

Are there any treatments for LAM?

A Multicenter International Lymphangioleiomyomatosis Efficacy of Sirolimus Trial (MILES Trial) found that rapamycin (sirolimus) was recently completed at the Center for LAM Research and Clinical Care. This research found that rapamycin stabilized lung function in some women with LAM, and was associated with a reduction in symptoms and improvement of quality of life.  Rapamycin is not approved by the Federal Drug Administration (FDA) for the treatment of LAM, however it is FDA approved for other conditions. Most treatments for LAM are aimed at easing symptoms and preventing complications such as, inhalers containing medicines to improve air flow in the lungs, oxygen therapy, procedures to remove fluid from the chest or abdomen, procedures to shrink kidney angiomyolipomas, and lung transplantation.

Is it safe for me to exercise?

Women with LAM should follow the same healthy lifestyle that is recommended for all Americans, including getting as much physical activity as you can. Your doctor may prescribe oxygen for you to use while exercising if you become short of breath with exercise.

What else should I know about LAM?

Women with LAM should follow the same healthy lifestyle that is recommended for all Americans, including getting as much physical activity as you can. Your doctor may prescribe oxygen for you to use while exercising if you become short of breath with exercise.

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