How to live with LAM

LAM affects each woman individually, but below we have highlighted some of the key general health issues that women need to be aware of. Note that for guidance on more specialist issues – such as supplemental oxygen, fitness to fly and pregnancy – please refer to your hospital respiratory doctors.

  • Avoiding oestrogen – Women with LAM should avoid treatments which contain the female hormone oestrogen. This includes the combined oral contraceptive pill and hormone replacement therapy for post-menopausal symptoms.
  • Chest infections – Women with LAM, like those with other lung diseases, are more prone to respiratory infections. To reduce the chance of getting more severe respiratory infections we advise those with LAM to be vaccinated against pneumococcus (the bug that causes pneumonia) and to have the ‘flu jab’ each year. Your general practitioner will be able to provide this for you. If you have symptoms of a chest infection, including worsening cough and bringing up phlegm, you should see your doctor. Infections should be treated as soon as symptoms appear and, as chest infections for women with LAM are more likely to need treatment with antibiotics, you should see your general practitioner when symptoms start. If you have a lot of respiratory infections, despite antibiotics, you should discuss this with your LAM specialist.
  • Keeping active – It is important to keep active and maintain a good level of activity within the limits of your lung function. An appropriate level of exercise helps you to maintain a healthy weight, preserves leg muscle strength and can help you walk further. Exercising with a lung disease is generally safe providing you build up gradually and stay within your limits. If you feel faint during exercise or need a long time to recover, it is likely you have done too much. It is sensible to discuss exercise with your hospital doctor or general practitioner before you start, especially if you normally use oxygen.
  • Pulmonary rehabilitation – Your general practitioner or hospital doctor may suggest pulmonary rehabilitation. This is an exercise and education programme run by specialists, in which the amount of exercise is adjusted to your level of lung functioning capability. It is generally very good for people with lung conditions such as LAM.
  • Panic attacks – As with other chronic illnesses women with LAM may suffer from bouts of anxiety and depression, and people with respiratory problems, such as LAM, often suffer from panic attacks. These attacks exacerbate symptoms of breathlessness and may mislead a woman into thinking that LAM is more advanced than it is. Help for panic attacks should be sought through LAM Action or from a doctor. Learning good breathing techniques from a physiotherapist can help.

Finally, don’t be afraid to ask for help! There’s lots of help available, so be sure to use it when you need it, especially in the later stages of the condition. For example:

  • LAM Action for emotional support and information
  • Professional counselling
  • Supplemental oxygen – portable and home
  • Blue Badge scheme (parking) – follow this link for details on how to apply for one
  • PIP: Personal Independence Payment (financial help) – follow this link for more details