Our Sixth Patient Workshop took place on Saturday. Held at Alexandra Palace it was a great venue that was well attended by AKU patients and their family members. In this week’s blog, we talk about how the day went.
The day started out with smiles and greeting from the AKU team. As Ciarán welcomed patients into the building, Rory was there to sign them in and give them their welcome packs.
After Lesley showed everyone to their seats, the day kicked off at 10:00am with a presentation from Nicholas Harrison from Patients Know Best (PKB). Nick explained to the audience the benefits of being able to control their own medical record, going into detail describing how useful PKB can be for those with complex medical histories.
Next up was AKU Dietitian Shirley Judd. Shirley’s presentation explained to patients why those taking nitisinone needed to control their protein intake. She described how keeping protein intake at a specific level helps keep tyrosine levels down. If levels get too high this may cause adverse effects to those taking nitisinone to treat AKU. She did a great job of highlighting how important controlling protein intake is whilst taking nitisinone.
The next presenter was Heidi Chan from Nutricia. Heidi explained to patients how Nutricia specialise in the delivery of medical nutrition. With products designed to contain amino acid-based protein substitutes. Free from tyrosine. Following on from Heidi was Tricia Rutherford from Vitaflo. Tricia showcased Vitaflo’s range of low protein and protein free foods. With both companies showcasing a range of their products at stands throughout the day, it was a perfect opportunity for AKU patients to see the options available that can help manage their protein intake whilst taking nitisinone.
After the first set of presenters were finished, it was time for a tea and coffee break. Giving everyone a chance to socialise and check out some of the stands that had been set up for the day. Attendees had the chance to try some products from Nutricia & Vitaflo, as well as Solemates, who sell insoles that provide extra support for flat feet and dropped arches, and Oatly who produce low protein milk alternatives. The stands were a huge success with attendees lining up to try out the brilliant products on offer.
Shanali Perera was next to present. Her work was centred on transforming the illness experience with art. Shanali showed AKU patients how they can express their pain or discomfort non-verbally as a coping mechanism. It was a very insightful presentation, speaking about the mental health troubles that having a rare disease can bring. Attendees were urged to get their smart phones out to have a go themselves, creating some impromptu digital art!
After lunch, it was time for gait specialists Gabor Barton and Hannah Shepherd to present. Gabor gave a presentation via a recording due to being taken ill and not being able to attend the event in person. He covered how movement analysis takes place through the gait procedure and gave an insight into the benefits of the latest 3D analysis technology. Following on from this PhD student Hannah gave her presentation on how to reduce joint pain by modifying your gait. She highlighted the progress being made in this field, showcasing the benefits of an improved gait.
The final talk of the day came from the ever popular Dr Adam Taylor. Adam gave the attendees the very latest on AKU research. He went into detail describing the most recent tests being done into all aspects of AKU. He ended his session with a Q&A, providing knowledgeable answers to every question that he was asked.
This marked the end of our sixth Patient Workshop. We would like to give huge thanks to everyone who attended the event, especially all of our wonderful speakers and exhibitors. We look forward to putting on more in the future.