We are delighted to announce that we will be hosting a mini online patient workshop for UK patients on February 11th. The Covid-19 pandemic has forced us to cancel our popular face to face patient workshops usually held in Liverpool every year. Due to this, we are holding them virtually.

The online workshop will be shorter than the face-to-face meetings, as we all know a long zoom session can be very tiring. The session will start at 2 pm, aiming to finish at 4:00 pm.

Starting the session will be Dr Milad Khedr, the National Alkaptonuria Centre’s (NAC) clinical lead based at the Royal Liverpool and Broadgreen University Hospitals. Dr Khedr will update attendees on the status of the NAC with COVID-19 lockdowns, AKU research and nitisinone.

The workshop’s central aspect is focused around “An Introduction to Mindfulness-Based approaches to Managing Pain, Illness and Anxiety”. This session is hosted by Steve Smith, an experienced mindfulness trainer from Rareminds. Rareminds is the counselling service that we have partnered with to offer our free AKU counselling service. Kym Winter, lead counsellor for Rareminds, will be introducing herself at the beginning of this session. If you would like to learn more about our free AKU counselling service, please head here.

Kym Winter

Evidence-based research has shown mindfulness techniques to be hugely effective in reducing the anxiety, depression, irritability, fatigue, and insomnia that arises from chronic pain and illness.

This session will explore some of the skills and strategies from the ‘Mindfulness for Health’ programme, which is currently offered within some NHS Pain Services. The AKU Society will be offering an eight week online ‘Mindfulness for Pain and Stress’ course later this year specifically for living with AKU.

There will be an opportunity to ask questions and experience some of the skills that can lead to a reduction in the effects of chronic pain and illness.

Steve Smith is rareminds Mindfulness Lead and Trainer. He has worked in both the private and public sector as a Personal Development Coach, and also as a Couples Counsellor for Relate. He spent many years as a professional Yacht Skipper and RYA Sailing Instructor, before training as a Mindfulness Teacher.

He is a core teacher trainer for the international Breathworks Mindfulness programmes, running both ‘Mindfulness for Health’ and ‘Mindfulness for Stress’ programmes. He also has lived experience of managing ongoing chronic pain, and uses the techniques he teaches on a daily basis to help manage pain and daily life. More information on Mindfulness here

If you would like to attend the session and are based in the UK, please email Le****@ak********.org