LAM (lymphangioleiomyomatosis)

Monitoring LAM

Regular check-ups with your healthcare team are an important part of managing LAM. Your healthcare team will work with you to keep track of your lung health and pick up any changes early. 

This may include: 

• lung function tests to check how well your lungs are working 
• CT scans or other imaging tests to monitor changes in your lungs 
• kidney scans to monitor non-cancerous kidney growths 
• regular reviews of your symptoms and overall health.

Prevent infections

Respiratory infections can make symptoms worse and may be more serious for people living with LAM. 

You can help protect yourself by: 

• staying up to date with recommended vaccinations 
• washing your hands regularly 
• avoiding close contact with people who are unwell

Seeing your doctor early if you develop signs of a chest infection

If you notice a worsening cough, increased mucus (phlegm or spit) or changes in the colour of your mucus, contact your doctor. 

Know when to seek urgent medical help

Some complications of LAM need urgent treatment. Seek medical attention straight away if you develop: 

• signs of a collapsed lung (pneumothorax) 
  • sudden chest or shoulder pain 
  • a sudden increase in shortness of breath 
• signs of bleeding from a kidney growth (angiomyolipoma) 
  • sudden or severe pain in your abdomen, side or back 
  • dizziness, especially when standing up 
  • blood in your urine.

Support your mental health

Living with a rare lung disease can be challenging. It is normal to experience feelings of stress, anxiety or uncertainty. 

Remember, you are not alone. Talk to your doctor about any concerns you may have and seek support from family, friends, healthcare professionals or peer support groups. Looking after your emotional wellbeing is an important part of managing LAM. 

Manage breathlessness

Breathlessness or being ‘short of breath’ is common with LAM. Learn how breathing techniques, positioning and handheld fans can help. 

Stay active

If you have symptoms such as breathlessness, you may feel like avoiding exercise. However, staying active can help improve fitness, maintain muscle strength and support your overall wellbeing. 

Aim to be active within your comfort level and speak with your healthcare team before starting a new exercise program. Exercise and education programs, such as pulmonary rehabilitation, can help you exercise safely and manage your symptoms. 

Look after your bone health

People with LAM may have a higher risk of low bone density and osteoporosis. Talk to your healthcare team about a bone mineral density scan to check your bone health. Weight-bearing and muscle strengthening exercise and getting enough vitamin D can also help keep your bones healthy. 

Don’t smoke or vape

If you smoke or vape, quitting is one of the best things you can do for your lung health. Your healthcare team can help you access support and quit-smoking services.  

Talk to your doctor about hormones and pregnancy

LAM may be affected by the hormone oestrogen. If you are considering hormone-based treatments or thinking about becoming pregnant, speak with your healthcare team about what is right for you. 

Help create a brighter future for the LAM community

The LAM community is raising $50,000 to support a dedicated LAM Clinical Fellowship. By donating you can help build specialist LAM clinical and research expertise in Australia, strengthening knowledge, care and future research for people living with LAM.

Donate now