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Adults with mito get connected at Patient Engagement Day

Support

21 October 2019

Adults with mito were given support, information and chance to connect at a Patient Engagement Day co-hosted by The Lily Foundation.

Three young women stand next to each other. In front of them is a women in a wheel chair

The event, held on Saturday at the National Hospital for Neurology and Neurosurgery in London, was jointly run by the NHS Specialised Mitochondrial Services department and The Lily Foundation. It was the latest example of how our charity is collaborating with clinics to improve the quality and range of services available to adult mito patients in the UK. 

The day included a breakout session for young adult patients (aged 18-35) facilitated by Liz Curtis, The Lily Foundation's CEO and co-founder. Attendees were given an introduction to the charity, and invited to ask questions and voice their opinions about how services for adult patients can be further improved. Feedback from the talk will be used to shape support for YA patients going forward. 

The meeting included a much-needed opportunity for attendees to socialise and share their experiences of living with a mitochondrial disease; something rarely offered in a typical clinical setting. Families, friends and carers of people with mitochondrial disease were also invited to attend. 

A large part of the day was given over to small group sessions facilitated by specialists within the field of mitochondrial medicine. Topics included fatigue and exercise, psychiatry and psychology, and diabetes. Professor Antonella Spinazzola of UCL Queen Square Institute of Neurology delivered an inspiring talk on her research into potential treatments, and there was also a talk by a representative from Muscular Dystrophy UK.

Feedback from patients attending the day was uniformly positive. Harry Cozens, a young adult with mitochondrial disease, said: 

"For me the day was a great way to find out about recent research and study programmes. We had the chance to talk face-to-face with the professionals and discuss the relevant progress that's being made. I enjoyed meeting up and chatting with people who have similar problems. It's good to be with people who understand mitochondrial disease."

Lily team member Janet Wilson, who helped run the event, said: 

"This was a really uplifting day for everyone involved, it was quite overwhelming to see the positive impact it had. People had some reservations at first, which is natural when you're not sure what to expect. But the atmosphere was very relaxed, and at the end it was great to see people swapping numbers and making plans to stay in touch."

Find out more

The Lily Foundation works with mitochondrial clinics in Newcastle, Oxford and London to co-host patient days throughout the year. For details about upcoming events visit the events page of the NHS Rare Mitochondrial Disorders Service

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