Patients with rare lung diseases were invited to a special education day at the Trust.
Organised by Dr Maria Kokosi, respiratory consultant, the aim of the event was to explore the needs of patients and provide them with information to manage their conditions.
The event was the first of its kind and included a busy agenda including talks from senior clinicians who specialise in rare respiratory diseases.
The talks covered the services provided by experts at the Trust, to the interpretation of lung function tests, developments in rare lung diseases and research opportunities.
Two patients were also invited to speak and describe how they approach dealing with a rare condition.
Dr Sunita Dhir was invited to speak about her experience of living with pulmonary alveolar proteinosis (PAP), a rare condition that is caused by a build-up of proteins in the lungs.
Afterwards she said: “It’s great to know that there’s so much research going on to find new treatments for rare lung diseases, to listen to the talks and have the chance to ask questions. It was also particularly nice to meet other patients with the same condition, hear their stories and share my own experience with people who understand.”
Sarah Woods was also invited to speak about her experience of living with lymphangioleiomyomatosis (LAM), a rare lung disease that affects mostly women and is caused when muscle cells and blood vessels in the lungs begin to abnormally multiply.
She said: “It was great to attend this event organised by our clinicians. It’s always useful to hear up to date information on our conditions. The session explaining lung function results was particularly useful.”
Consultant Dr Cliff Morgan, who has been running the pulmonary alveolar proteinosis service for more than 30 years, said: “We learn so much from the people who actually have to put up with the illness and its treatment.
“This has never been more important than today – we are potentially on the brink of new treatment options and will need the help of the patient community to ensure that we make the right decisions about which treatment option is best for each individual at any particular time.”
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