I am very new to Alström Syndrome, beginning my journey with the condition in 2018. It has been a very interesting journey but I’m very grateful for all the support I’ve had along the way which has given me insights into both my health conditions and myself.   I qualified as a Social Worker in 2018 and have always been passionate about promoting and empowering independence both for myself and others. Since graduating with my Masters, I have dedicated myself to working with people with a range of disabilities which has allowed me to achieve all that I have wanted to.  In addition to being the Wellbeing Coordinator for ASUK, I also work as a Counsellor and Crisis Recovery Mentor at a mental health charity. I pride myself on providing a safe, non-judgemental person-centred environment for my clients.  In 2020, I decided to pursue a career in Humanistic Therapeutic Counselling which I completed in June 2023. I believe that everyone deserves a safe space where they can speak openly and freely without judgement, and this is what I endeavour to provide for the people I work with.  I also work for my local University’s Service User, Carer Advisory Participation Group (SUPA group). As well as being part of the interview process for prospective students, I also provide teaching support for lecturers and have created and taught sessions. I have also collaborated with colleagues to produce guides for both students with disabilities and placement providers to enable independence and participation, as well as a piece for the British Association for Social Workers about online working during lock down.  I have worked over a number of years facilitating a group for young people with Alström Syndrome, the condition which I have. This group provides a sense of community for the young people where they can speak openly about how the syndrome affects them and be supported by both peers and myself. I also developed talking groups for adults with Alström during lock down, again to provide a sense of community.  I believe that Mental Health is still stigmatised in our society, with individuals feeling reluctant to discuss any issues. I feel that in order for greater acceptance it is the job of leading organisations such as ASUK to shine a spotlight on Mental Health provision, so that our families can be supported to flourish not only physically but psychologically. Research states that when an individual has good physical health then their mental health is improved. It is important to me that we create the right environment so that people who are impacted by Alström Syndrome are supported so that they feel empowered to live their best life and develop insights into their thoughts, feelings and emotions.  I am looking forward to supporting the AS community as part of this exciting Wellbeing Service. You can contact Melissa by email melissa.crowland@alstrom.org.uk

Carol Prescott