Living With and Managing Lymphangioleiomyomatosis (LAM)

Lifestyle Changes and LAM

Overall, it is important for you to take good care of your health. This means adopting the same healthy lifestyle that is recommended for all adults, including eating a healthy diet, being as physically active as you can (and as advised by your doctor), getting plenty of rest and not smoking. Be sure to get your flu shot every year.

We suggest checking with your doctor before traveling by air, to areas where medical attention is not readily available or to places the amount of oxygen in the air is low.

Pregnancy, Birth Control and LAM

Although the role of hormones in LAM is not well understood, the relationship between changes in hormone levels and disease progression is an active area of research. If your lung function is normal, pregnancy may be an option. Because some doctors believe that hormones in your body during pregnancy may cause your disease to progress, it’s important to discuss pregnancy plans with both a pulmonologist and endocrinologist who specialize in LAM, as well as your obstetrician. Adoption, gestational surrogacy and traditional surrogacy are some of the options that you may consider as viable alternatives to pregnancy. Women with LAM and TSC are advised to consult with their physician specialist(s).

Coping with your diagnosis of LAM

Receiving a diagnosis of Lymphangioleiomyomatosis (LAM) can be difficult and can quickly trigger a wide range of feelings. It is quite common for one to feel any of the following: disbelief, fear, anger, confusion, being overwhelmed, numbness, and loneliness. Every woman copes with her diagnosis differently and it is important to listen to and respect your feelings. You may want to discuss with your loved ones or health care providers how to seek the form of support that is right for you. That type of support may change over time as your needs change.

Coping with a lymphangioleiomyomatosis (LAM) diagnosis can be difficult as the disease progresses. It can affect many aspects of your life, including your:

  • Ability to get from place to place easily and breathe on your own
  • Independence as you may become increasingly reliant on others for help
  • Plans to get pregnant
  • Ability to travel certain places
  • Intimacy with your partner

Overall, it is important for you to take good care of your health. This means adopting the same healthy lifestyle that is recommended for all adults, including eating a healthy diet, being as physically active as you can (and as advised by your doctor), getting plenty of rest and not smoking.

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