Community Connect 2023 was held at the architecturally stunning Library at the Dock in Melbourne on Sat 3 June. This event for adults living with TSC and carers and companions of TSC had participants not only from Melbourne and Victoria, but also representatives from Queensland and Western Australia. Their participation was made possible thanks to grant funding from the Department of Social Services.
The day started with an excellent presentation on kidney issues in TSC and kidney health from Dr Matt Sypek, nephrologist at Royal Melbourne and Royal Children’s Hospital, Melbourne. Matt talked through the kidney screening and surveillance needs of people living with TSC and the possible treatments available. He highlighted that most people living with TSC have kidney AMLs, but also that the vast majority will have no problems from these AMLs.
The engaged audience asked many questions of Matt, including why 3cm is the size at which AMLs are considered problematic and whether mTOR inhibitors can be administered for AMLs less than 3cm. You can watch Dr Matt Sypek’s presentation here.
The attendees then gathered in geographically-based groups to discuss their experiences of health care provision and their ideal model of care. Issues raised focused on the problems encountered in moving from the child to adult services, the lack of co-ordination of care for adults and the need for multiple appointments, in a number of hospital locations. The majority of those present supported the idea of a multi-disciplinary TSC clinic in Melbourne.
At lunchtime, a number of the Living with LAM community joined the group and the afternoon kicked off with Alison McIvor, who is both a TSA Committee member and a Living with LAM Committee member talking about her lived experience of living with both conditions, how it has impacted her and the strategies she uses to live her best life.
Dr Helen Whitford, lung physician at the Royal Alfred Hospital in Melbourne shared her expertise on LAM, including the latest research and treatment options, and discussed a number of related issues including vaccinations, fertility and contraception. There were many questions and comments from the highly engaged audience. You can watch Dr Helen Whitford’s presentation here.
The day concluded with a session from Karen Bradford, mindfulness practitioner and nurse, who demonstrated how a 3 minute focused breathing exercise can be very soothing and significantly reduce spikes in heart beat variations for up to 6 hours.
Daniel Price who flew in from the US, said, ‘I loved seeing how engaged the adult community was at this event. Makes me happy to see so many strive the best for their loved ones or themselves.’
Daniel was not alone. The feedback from the event showed a really high level of satisfaction with 92% rating the event excellent or very good and all attendees saying they met someone they could learn from. There were also a lot of appreciation about the event focusing on adults and giving adults and their carers a chance to share and connect.
Virginia Marie Hell, one of the many participants from Victoria, said, ‘Many thanks to TSA, speakers and all involved in putting on the event. Absolutely worthwhile in hearing the speakers and a pleasure to meet some of the talented young people that have TSC.’
TSA would like to thank all participants and speakers and both the Department of Social Services and Living with LAM for sponsoring this event. It really was lovely to be able to meet in person again and learn from and connect with each other.