Top 10 priorities

A paper discussing these priorities was published in ERJ Open Research:

Read the paper

LAM checklist for healthcare professionals

Women with LAM told us that as LAM is such a rare condition, more awareness of its symptoms by local doctors would help with getting a diagnosis and the best treatment. This quick guide is to share with doctors.

When to suspect LAM

  • A woman, typically young or middle-aged, presents with pneumothorax, chylothorax or progressive shortness of breath without clear explanation.
  • A woman has been diagnosed with COPD despite having no history of smoking or asthma, and without exacerbation or remission.
  • Lung cysts consistent with LAM are discovered on CT scans done for other reasons.
  • Incidental discovery on CT or US of an angiomyolipoma, a fatty kidney tumour.

What to do if you think your patient may have LAM

  • Order a high resolution thoracic CT.
  • Order a lung function test including spirometry, lung volumes and diffusing capacity.
  • Other diagnostic measures can be considered e.g. serum measurement of VEGF-D.

What to do if LAM is confirmed

  • Reassure your patient. She is likely to be shocked at being diagnosed with an incurable disease but many women lead long and full lives following diagnosis.
  • Recommend alternatives to medications containing oestrogen, including contraceptive pills and vaginal lubricants.
  • Encourage your patient to take care of herself physically and psychologically.
  • Refer your patient to a respiratory specialist with expertise in LAM and /or a LAM specialist centre. See our map of LAM centres/specialists.
  • Tell your patient that there are support organisations providing information and support. See our map of support organisations.

This summary information is based on information produced by LAM Australia Research Alliance and is used with their permission.