Coping

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.

In the early stages of LAM, you usually can go about your daily activities, including attending school, going to work, and performing common physical activities such as walking up stairs and hills. Later on, it may be harder for you to be active. You also may require oxygen. It is wise to check with your physician about potential risks before traveling to remote locations or places where the amount of oxygen in the air is low.

Ongoing medical care is important. Treatment by a team of experts from the fields of pulmonology, urology, interventional radiology, anesthesiology, thoracic surgery and reproductive endocrinology that specializes in LAM is recommended. These specialists are usually located at major academic medical referral centers.

The LAM Health Project can help you find the experts that you need. If your lung function is normal, pregnancy may be an option, but you should discuss this with a team of experts, including but not limited to pulmonologists, specializing in LAM.

Most doctors do not recommend oral contraceptives (birth control pills) containing estrogen and also suggest avoiding estrogen-rich foods.

Finding one or more women with LAM to speak with, getting actively involved in finding a cure for LAM or joining a LAM support group may be helpful ways to cope with your diagnosis. The LAM Health Project can provide you with information about all of these opportunities.