4 minute read
World Congress inspires global Down syndrome community
By Zandra Vaccarino
The hosts of the 13th World Down Syndrome Congress in Glasgow, need to be congratulated on delivering on their marketing that the 2018 World Down Syndrome Congress would be “three days filled with world renowned speakers, cutting edge research presentations, and opportunities to socialise and meet people from across the Globe”. I attended the WDSC 2018 as a participant, National Executive Officer for the NZDSA and as co-presenter with Erin Smith, a member of STRIVE. The title of the presentation was STRIVE – SelfAdvocates Working Together To Have a Voice and Become Rights Champions. The presentation highlighted the journey of STRIVE, the milestones in the development of STRIVE and how they use their self-advocacy and leadership skills to influence service quality and contribute to transformation. I had minimum input into the presentation, and watching Erin so confidently present was my personal highlight at the WDSC 2018. I also attended the pre-conference “Health Day Symposium” organised by Down Syndrome International for health care providers and researchers who have a special interest in the clinical care of children and adults with Down syndrome. The symposium provided the opportunity to consider current and important developments in prevalent medical conditions. The four topics presented were
1. Emerging issues relating to coeliac disease in children with Down syndrome. 2. Adult health screening – Should we be screening for conditions less common in Down syndrome which are recommended for the general adult population? 3. Sleep disordered breathing in children with Down syndrome. 4. Mental health in adults with Down syndrome – prevalence, presentation, grief/ bereavement, impact on caretakers/family, comorbid medical concerns, treatment approaches. Following the initial presentation, we had the opportunity to share our thoughts and experience in the field. The focussed discussions facilitated participants to reach consensus on key areas, moving forward with the long-term aim of improving healthcare outcomes for people with Down syndrome. The discussions also highlighted the disparity of approaches, resources and health outcomes around the world. Unfortunately there is not enough space to report in detail on all these sessions in this edition of CHAT21, but I will be sharing the information in future articles. The key message I took away from the Health Symposium was the additional health risks that seem to be emerging around sleep disordered breathing. This is crucial for further research and awareness, so children and adults with Down syndrome are assessed and treated. The discussion did address the issue that whilst assessments can be done, often the treatment, like the use of CPAX machines may not be tolerated well or even used, so the solution is not without challenges. Back at the main conference it is very difficult to put into words the energy, excitement and anticipation that was almost tangible at the opening ceremony. It was truly a sense of community as an estimated 1250 people with Down syndrome, their families and professionals from over 95 countries watched as people with Down syndrome marched into the auditorium carrying flags to represent the global Down syndrome community attending this event. It was a wonderful celebration. The WDSC programme offered four strands: experience, research and practice, widening opportunities, and improving lives. I certainly experienced many moments of intense FOMO (Fear Of Missing Out) as each session offered so many concurrent sessions that it was extremely difficult to select a handful of sessions from the over 150 sessions on offer.
Erin Smith and Zandra
Zandra and Christel van Baalen at the opening ceremony
Deciding on what to attend was challenging but I finally decided that instead of following one or two streams, I would rather cover a broad range of topics, so I could glean information from across the various stages of life for people with Down syndrome. I also attended presentations that were relevant to the NZDSA’s recurring support requests and work streams.
These are the key sessions I attended: 1. Informing, supporting and empowering families 2. Youth and adults – journey to independence and a good life 3. Antenatal screening 4. Health 5. Education 6. Speech and language.
As I mentioned before I will share my insights in future articles and through new resources in more detail, but the information I gained will inform the support the NZDSA can provide, and assist with systemic advocacy. The key message I took home from the range of sessions I attended was that the people with Down syndrome and their families truly drive change, widen opportunities and improve lives. Systems, programmes and professionals assist, but the true drivers of sustainable and ongoing change and transformation are self-advocates and their families. Congress presentations are made available on their website To be attending a WDSC is indescribable and is something that must be experienced to be fully appreciate.
