ELF and patient organisations call for improved diagnosis and access to drugs for people living with LAM
A paper produced by ELF, patient organisations and healthcare professionals that highlights priorities for the diagnosis, treatment and care of people with lymphangioleiomyomatosis (LAM) has been published in ERJ Open Research.
Among the top priorities were: improving diagnosis of LAM, making drugs that treat the condition available across the EU, as well as giving people with the condition access to specialist LAM centres for treatment and support.
LAM is a rare lung condition almost exclusively affecting women of childbearing age, which currently has no cure. The condition causes cysts to develop in the lungs and symptoms include breathlessness. Some people with LAM also develop tumours in their kidneys.
The paper is an outcome of the ELF patient priorities LAM project, which is led by people affected by the condition.
To find out the priorities, ELF asked the views of people who have LAM, caregivers and healthcare professionals in an online survey, followed by a workshop at the European Respiratory Society International Congress in Munich in 2014.
Picture: The LAM workshop at the European Respiratory Society International Congress in Munich in 2014.