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Tuberous Sclerosis Complex can lead to problems in the lungs, most commonly for women living with the condition.

TSC (Tuberous Sclerosis Complex) can cause complications in the lungs, called ‘lymphangioleiomyomatosis’ (or ‘LAM’).

LAM occurs when there is an overgrowth of cells in the airways, blood vessels and lymph (fluid) vessels of the lungs.

LAM is much more common in women living with TSC compared to men, with around 3 in every 10 women living with TSC also developing LAM. As a result, it is believed that the hormone oestrogen, which is found in greater amounts in women than men, plays a part in how LAM develops.

LAM develops most commonly between adolescence and middle-age.

The impact and severity of LAM varies significantly amongst individuals living with TSC, with problems ranging from shortness of breath and coughing to chest pain or a collapsed lung.

Clinical guidelines for LAM

Recommendations on how to identify, monitor and treat LAM have been developed at both a European and UK level. The European Respiratory Society released their guidelines for all cases of LAM in 2010, with UK guidelines for LAM in people living with TSC published as part of the wider guidance on the diagnosis, treatment and management of TSC in the UK.

Monitoring and treating LAM

Screening of the lungs to search for LAM is recommended using a computed tomography (CT) scan every 5 – 10 years. If LAM is identified, annual pulmonary function testing is recommended to monitor the impact of LAM. If there is evidence that there has been a loss of lung function as a result of LAM, pharmacological treatment might be recommended by a clinician.

Nottingham University Hospitals is home to the National Centre of LAM, which provides a comprehensive LAM clinical service including: Diagnosis of suspected LAM, ongoing respiratory care, surgical assessment and treatment of complications. You can find the clinic’s details here.

LAM is a rare condition, which means that some non-specialist clinicians may not be familiar with it. The National Centre for LAM suggests that you keep the following paragraph with you at all times – either saved on your phone or printed out – so that you can show it to doctors either during routine check-ups or during an emergency situation:

This patient has lymphangioleiomyomatosis (LAM), a rare disease characterised by lung cysts, lymphatic abnormalities and angiomyolipoma, a benign renal tumour. Women with LAM can have recurrent pneumothorax, airflow obstruction causing respiratory failure and acute bleeding from angiomyolipomas. Symptoms consistent with pneumothorax or renal bleeding should be investigated urgently.

LAM research funded by the Tuberous Sclerosis Association

The Tuberous Sclerosis Association (TSA) is proud to be part-funding research at Cardiff University into TSC.

Dr Elaine Dunlop and her team at Cardiff University will carry out a new project with the aim being to create a LAM model. If the research is successful, it will give scientists a better understanding of why TSC LAM happens and why some cells invade the lungs whilst others do not.

Find out more about the work of Dr Dunlop and her team into LAM on the TSA-funded research page. You can also find out more about Dr Dunlop and her work as a TSC researcher here.

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