Last week our first International Patient Workshop took place in Liverpool, bringing together the biggest collection of AKU patients ever! In this week’s blog, find out more about the day and the importance of supporting our international patients and their families, to build a strong, supportive AKU community.Our International Patient Workshop really was a monumental occasion. This was the first time we have invited AKU patients from all over the world to attend one of our workshops, with patients attending from 13 different countries, including Jordan, Argentina, Slovakia, Poland, Holland, Spain, Sweden, Canada, USA, UK and Belarus. In many of these countries, little, if anything, is known about AKU, so the workshop was their first opportunity to meet and learn from AKU experts. For some, this was also their first time meeting other AKU patients. It was incredible to see patients of all ages and nationalities connect, share experiences and learn about their condition.
The workshop’s location in Liverpool was also significant, as it is the home of the late Robert Gregory who founded the AKU Society back in 2003. The Royal Liverpool University Hospital is also the home of some of the world leaders in AKU research and hosts the National AKU Centre (NAC); the only centre of excellence in the world. It was therefore the perfect location to welcome our AKU patients and we were even greeted with glorious sunshine for the occasion.
The day began with a tasty breakfast and warm welcome from our CEO Oliver Timmis. This led on to the first session on chair based exercise, run by our Patient Support Manager, Hannah Harrison and her daughter, University of Cumbria student, Charlotte Harrison. Pain and joint problems can make movement challenging for AKU patients, but this makes it even more important to keep active. The session demonstrated light exercises that patients can do at home to maintain their strength and keep joints supple.
The next two sessions focused on pain, something many of our patients have to contend with on a daily basis. The first speaker, Pete Moore has used his own experience of living with chronic pain to develop The Pain Toolkit, a self-management guide for managing pain effectively. By accepting the challenges they face and making the necessary adjustments, Pete believes people living with pain are able to live a good quality of life, Pete’s personal journey being a great example of this. The next speaker, Dr Andrew Jones shared his experience and knowledge of providing specialist pain relief to patients attending the NAC.
Afterwards, James Moore from the mental health charity Mind, explained the importance of understanding different aspects of mental health along with the importance of maintaining good mental health when you have a physical health condition. With over 30 years in the psychiatric sector, James underlined how important these issues are.We also heard from our specialist AKU dietician Shirley Judd. As AKU affects tyrosine levels, patients are often given differing advice about recommended protein intake. Shirley’s presentation stressed the importance of maintaining a healthy diet, keeping bones and joints healthy, which is especially important when young patients are still growing. AKU patients who take nitisinone need to monitor their protein intake and Shirley and Hannah are in the process of creating a book of low-protein recipes to support patients with this.
After a tasty lunch and our very own AKU cupcakes, Gabor Barton and Hannah Shepherd ran a session on gait analysis. Gait analysis measures differences in joint movement and NAC patients provide important data demonstrating the progression of AKU and the effect of nitisinone on this progression. It was exciting to learn that future research could help to reduce knee pain through suggested gait modifications.Dr Adam Taylor gave a valuable session on AKU research. As AKU currently has no licensed treatment, continued medical research is vital and it was reassuring to hear about the numerous past and present research projects, designed to understand and treat AKU. Adam also presented promising results from our recent SONIA 1 study that found 8mg of nitisinone reduced HGA levels by 98.8%.
talk of the day came from Sophie Taylor and Nadia Burgess from the Rheumatology Physiotherapy team at the Royal Liverpool University Hospital. They gave a fascinating presentation on how physiotherapy can benefit AKU patients, along with how it can lead to a better understanding of the disease.
The day was a huge success, with lots of engaging sessions, interesting discussions and long-lasting memories. Slovak patient Anna Antalova, reflects on what the day meant to her;
‘The first International Patient Workshop in Liverpool was a big success for the AKU-Society team. It was an excellent event, giving a great example of how rare disease patients need to be treated and how many benefits can be given to them within a single meeting. I also loved speaking with many patients from different countries and especially with all of you (Hannah, Oliver, Lydia, Eve and Ciarán). I enjoyed each conversation and agenda topic and it gave me lots of personal motivation to keep going!’
We would like to say a massive thank you to Sobi for sponsoring our workshop through an educational grant. We would like to thank our wonderful community for supporting our fundraising efforts and helping us raise a massive £8652.41 for patient travel grants. We would also like to thank our fantastic photographer Dave Adkins, who many of our patients may remember as the medical photographer at RLUH hospital before he retired. Finally, we would like to thank our patients and families for making the workshop such a success, sharing experiences, supporting one another and building a strong AKU community.
If you would like to support us to be able to run future patient workshops and continue delivering the highest quality care to AKU patients and their families, why not join our team of fundraisers! We have lots of events happening throughout the year; whether you want to run, walk, swim, cycle, sing or bake your way to success, we would love to hear from you! Please email [email protected] to find out more!
