Our Seventh Patient Workshop

On Wednesday 22nd November, the AKU Society held its seventh Patient Workshop. Alkaptonuria (AKU) patients from all over the country, with their families and carers, flocked to the Bluecoat in Liverpool. A day of advice and networking was in store for them.

Lesley Harrison, our Patient Support Manager, opened the morning. The workshop was, in large part, the result of her efforts. It seemed right that she should start, giving out copies of the AKU Society’s latest leaflets for comment.

Before long, she handed over to representatives of two specialist nutrition companies - Katey (from Nutricia) and Rachael (from Vitaflo). They both spoke briefly about their products, which are available to National Alkaptonuria Centre (NAC) patients on prescription. Patients also got to try them out on the Nutricia and Vitaflo stands!

Talks after the first break came thick and fast. Professor Jim Gallagher, a leading AKU researcher at the University of Liverpool, gave an overview of the research that has been conducted in the last few years. Professor Ranganath, Chief Investigator for the ongoing clinical trials, spoke next. He explained how close we are getting to an effective treatment for AKU. Then, Nick Harrison advertised the online patient care management system Patients Know Best. This is used by the NAC to keep patients in touch with medical professionals.

After lunch, we had Shirley Judd, the NAC dietitian. Much-appreciated by AKU patients, she gave them tips on limiting protein in their diet to stop tyrosine (a by-product of the AKU treatment process) building up. On a similar note, Dr. Milad Khedr then spoke. He talked about his study into tyrosine breakdown itself. The most arresting talks, however, came at the end. Three patients - Antony, Paul and Brenda – spoke about their AKU journeys: their pain-free childhoods, their diagnoses and the ways in which they had come to terms with their conditions. All were thankful for the work the NAC and the AKU Society were doing, even if Paul joked that ‘without my black urine (an AKU symptom) I felt bereft’.

When Nick Sireau, our CEO, closed the workshop, he left behind an enthusiastic room – tired, perhaps, but not so tired that they didn’t pass by the AKU Society stall to chat to our team, find out more about our work, and try out the variety of living aids on show. People were also eager to buy our Christmas cards. Don’t worry though – they’re still available here, online!

We would like to thank our sponsors, the Edith Murphy FoundationDonald Forrester Trust and Breaking Down Barriers for their generosity. Without their support the day could not have gone ahead. A big thank you must also go to everyone who spoke, as well as to all the AKU patients and supporters who made the journey. We look forward to seeing some of you at next year’s international workshop, which is currently being planned!

AKU Twitter

AKU Blog

Brexit and AKU

In 2019, the AKU Society’s international clinical trial, DevelopAKUre (http://www.developa.. ...more

Rare Disease Day 2018

On Wednesday February 28th the world marked Rare Disease Day (https://www.rarediseaseday.org.. ...more

Edinburgh Half Marathon: Meet The Runner

The AKU Society is thrilled to introduce you to Jamie Rumbelow. Jamie is running the Edinbur.. ...more

A Tyrosine Study with Dr. Milad Khedr

Dr. Milad Khedr is a doctor at Royal Liverpool and Broadgreen University Hospitals. He is st.. ...more

Browsealoud - A New Accessible Tool For Our Website.

To make our website more accessible to visitors with different needs, the AKU Society has in.. ...more