Rare lung disease event proves a success

Patients with rare lung diseases were invited to a special education day at Royal Brompton & Harefield NHS Foundation Trust on Wednesday 8 May. 

Organised by Dr Maria Kokosi, a respiratory consultant at the Trust, the aim of the event was to explore the needs of patients with rare lung diseases and providing them with the information needed to manage their conditions.

The event was the first of its’ kind at the Trust and included a packed agenda filled with talks from senior clinicians, who specialise in rare respiratory diseases.  

The talks covered everything from the services provided by the hospital (Dr Maria Kokosi, Charlotte Hogben), to the interpretation of lung function tests (Suzie Thomas), the developments in rare lung diseases and the research being conducted (Dr Cliff Morgan, Dr Elizabeth Renzoni, Dr Philip Molyneaux, Dr Maria Kokosi, Dr Thomas Pickworth). 

However, the day was not all about clinicians telling patients about rare diseases. Two patients were also invited to speak and describe what it’s like living with their conditions.

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. 

After presenting she said: “It’s great to know that there’s so much research going on to find new treatments for rare lung diseases. It was great listening to the talks from clinicians and have the chance to ask questions. And 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! 

“Meeting up with other patients with the same condition is always a great support, not only to make new contacts but to catch up with old friends too. Thank you to all who were involved in arranging the day."

Feedback from the event was overwhelmingly positive, with one patient commenting that he “learnt a lot from the talks and from interacting with other patients.”

Dr Maria Kokosi, who runs a rare disease clinic at the Trust, is keen to see this group of rare disease patients given the same opportunities to learn about their disease as patients with more common lung conditions.

“It was a great day and the patients’ enthusiasm was rewarding. Our rare lung disease service is growing and patients’ education is an important part of it.” Dr Kokosi said.

Dr Cliff Morgan, clinical director at the Trust, has been running the pulmonary alveolar proteinosis service for more than 30 years and said:

“We learn so much from the people who actually have to put up with the illness and its treatment. Only by engaging with them can we refine management styles to maximise benefit and minimise the hardship and work together to achieve great outcomes. 

“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 PAP patient community to ensure that we make the right decisions about which treatment option is best for each individual at any particular time.”

The team is already planning an education programme for next year.

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