Last week’s blog looked at our recent Patient Workshop held at Everton Football Club. In today’s blog we find out more about the day, from one of the patient who attended, Simon Laxon, and his Dad.
“I attended the 4th AKU Patient Workshop on Saturday 29 November, at Goodison Park. I’d asked my Dad along, as it would be the first time he had met anyone from the AKU Society or anyone else with AKU.
We arrived at the workshop and were given priority free parking, before being greeted at the door by Alistair and Pauline from the National AKU Centre. We were given an itinerary of the day, along with lots of leaflets and freebies. We were also treated to hot drinks and breakfast, which was something we looked forward to after the 3 hour drive. We had a good chat with friends before being asked to take our seats for the first presentation.
Up first was James Moore, from the National mental health charity (MIND), talking about good mental health and the effects of depressive conditions. We learnt how mental health affects a person, especially someone with a chronic disease. James used lots of diagrams and examples to explain his points and it made me look at depression in new ways. He ended the first part with a well earned coffee break.
The second half of James’ presentation dealt with anxiety and depression. I learnt that mental health is not classified as just one disorder, but a group of various conditions. We saw how people can suffer and handle anxiety, stress and depression in different ways. Most of all, I learnt that you need not be alone and can always find help; either from professionals or self help. We were given booklets to accompany the presentation that were interesting to read and gave some great advice.
After James finished, we had a lunch break, and were invited out onto the Everton football terraces for a group photograph. We were also lucky enough to be treated to a tour of the football ground, which included the player’s tunnel and lounge areas. Even for a non football fan, it was a real treat!
After lunch, Prof Ted Lock spoke about his discovery of nitisinone. The drug was originally an herbicide and thanks to Ted’s team, was eventually was used to treat Tyrosinaemia Type I (a life threatening genetic liver disorder). Before nitisinone, the life expectancy of a child with Tyrosinaemia was just a few years. With nitisinone treatment, the child could live a near normal life, accompanied by a strict low protein diet.
Ted explained some of the chemistry behind nitisinone, how it blocks HGA and could be a great treatment for AKU. Most interesting was how nitisinone works, and the possible side effects, which are totally reversed when nitisinone is stopped. I felt privileged that Ted took the time to give his presentation and felt hope for everyone with AKU and Tyrosinaemia.
After Ted’s talk, we formed into small groups. Each group were given the old leaflets and asked our opinions on creating new leaflets, welcome pack for the NAC and general information. It was good to be able to voice our opinions and have some input. We also learnt about the future of the NAC and the clinical trials.
We had a great day overall and it was really good to see and talk with new and old friends. My Dad especially enjoyed the day and was made to feel welcome by all involved. He particularly enjoyed the tour of Everton football club!
I’d highly recommend future patient workshop to anyone thinking of attending. You’ll get to meet other patients, AKU staff and medical experts. The presentations are informative and speakers will give you a chance to ask all your questions about AKU. A lot of hard work is done by the AKU Society, and especially Lesley, to make the day interesting and useful to everyone. You’ll not be disappointed!”