National Centre for LAM

Lymphangioleiomyomatosis (LAM) is a rare multi-system disease, which almost exclusively affects women. LAM can cause progressive loss of lung function, leading to breathlessness, lung collapse and lymphatic problems in the chest and abdomen.

The National Centre for Lymphangioleiomyomatosis (LAM) is a comprehensive clinical service for patients with LAM. It provides clinical care:

  • Diagnostic workup of patients with suspected LAM
  • Ongoing respiratory care either exclusively at the centre or in partnership with local providers
  • Clinical and genetic evaluation of Tuberous Sclerosis Complex (TSC) in patients with LAM and evaluation of LAM in patients with TSC
  • Evaluation and monitoring of renal angiomyolipoma
  • Surgical assessment and treatment of complications
  • Pre lung transplant evaluation and referral

In conjunction with the University of Nottingham, the LAM centre is also a hub for clinical trials of new therapies for LAM, evaluation of biomarkers, outcome and laboratory research into the molecular basis of the disease.

 

Be LAM aware

As LAM is rare, many doctors in general practice and Accident and Emergency will not be familiar with the disease. If you have any symptoms of pneumothorax or bleeding angiomyolipoma it may help to show them the text below. We recommend you copy and paste this into your smartphone or print it out and keep it in your wallet or bag.

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.

 

European Respiratory Society Treatment Guidelines for LAM

Click here to download the European Respiratory Society guidelines for the diagnosis and management of lymphangioleiomyomatosis.

Contact us

Tel: 0115 970 9322

Email: LAMcentre@nuh.nhs.uk

NHS Nottingham University Hospitals
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