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We at Findacure spend a lot of time advising patient organisations how they can better their patient outreach and support. It isn’t often though, that we get to attend a workshop targeted at patients with a specific rare disease. To better understand how patient engagement can be achieved by patient groups, Libbie and Rick headed to Liverpool on Wednesday to attend the AKU Society’s International Patient Workshop. Alkaptonuria, also known as AKU or Black Bone Disease, is a degenerative disease that causes severe and early-onset osteoarthritis. As patients reach their early thirties their movement deteriorates as the joint pain sets in. Multiple joint replacements are common throughout life.

After boarding a coach to Everton FC’s ground, where the workshop took place, we were treated to a hearty breakfast and took our places in the main conference room. Glancing over the schedule, we were delighted to see the sheer variety of topics that had been worked into the day.

The first session, run by Lesley Harrison, of the AKU Society, and Charlotte Harrison, of University of Cumbria, got our hearts pumping and our heads alert with an exercise class. Normal exercise classes tend not to be appropriate for AKU patients who experience a lot of joint stiffness and pain; however, patients benefit a lot from good muscle strength and balance. This session aimed to reintroduce patients to physical activity with a series of chair-based exercises. These are designed to remove the strain and impact associated with conventional workouts.

We then heard about pain management techniques from two consecutive speakers. The first was Peter Moore, an advocate experienced in pain self-management. Having been awarded Pain Champion UK in 2014, his ‘Pain Toolkit’ was written with simplicity in mind and is widely available in a number of languages and as a mobile app. The second speaker, Dr Andrew Jones, is a consultant in Anaesthesia and Pain Management at The Royal Liverpool Hospital. He introduced us to some medical methods pain relief. Such techniques can give a window of opportunity for patients to begin self-management.

After a short break, we were given a talk by James Moore from the charity Mind. He taught us about the multitude of mental health issues that patients might experience, and how we can deal with them. He was followed by Shirley Judd, former Chief Dietician at The Royal Liverpool Hospital, who advised the group about leading a healthy diet with AKU. Because of the metabolic pathway that AKU follows, patients need to restrict the amount of protein in their diet at different times in their life, while making sure their diet provides sufficient levels of calcium and vitamin D for bone health.

Following lunch, talks focussed more on scientific research into AKU. We were taught about gait analysis and how to interpret report patients receive from Dr Gabor Barton and Hannah Shepherd about their gait. It was also explained that the pair have begun exciting new research into ways to modify the gait of AKU patients, with the hope of minimising pain and stress in their joints. Their talk led into another on current research in AKU given by Dr Adam Taylor, senior lecturer in Anatomy at Lancaster University. We learned about his research in AKU progression, and about the ongoing clinical trial at The Royal Liverpool Hospital. Adam did a great job at explaining the science of AKU in a clear manner, and the audience were all keen to learn more about his work.

After being treated to a tour of Everton’s ground, we then heard about physiotherapy opportunities for AKU patients.

The day was organised really well by the AKU Society’s team. All the speakers were relevant, engaging and punctual, and it was great to see alkaptonuria patients of all ages and nationalities sharing information and learning together about their common rare condition. There was a real sense of community during the event and high levels of engagement from the audience; whether with the research being done into AKU, or the ways they can learn to manage their own condition. We would like to thank the AKU Society for allowing us to be part of their event, and all of the patients for making us feel so welcome.[/two-third][one-third]20160420_111345IMG_0097IMG_0092AKU Cakeceeran[/one-third][/row]

Black boned and not alone

by Rick Thompson time to read: 3 min