25th September 2019, we celebrated yet another milestone in our organisation. We launched the first-ever sickle cell disease support meetings in Australia. These meetings were part of our promises at the official launch in June 2019. ASCA has members that are affected at different levels of this disease. We have patients that are directly affected by this disease, we also have parents who have children with sickle cell disease. Other family members and friends are also part of ASCA.
The need to have a face to face support group was something that was necessary to introduce. Our first meeting attracted more than 16 members including adults and children. The meeting was very successful and we heard from parents and children on how they cope with having this disease. Our youngest patient was about 7 years and it was good to involve the children who participated by giving them an ASCA booklet to read with information about sickle cell disease and interpreting this in their own words.
The children were also given a booklet to draw the red blood cells as well as the sickle cells and they were asked to explain the differences. These meetings were even more special with the presence of the Clinical Nurse Specialist – Haematology from the Royal Children’s Hospital. The meeting was very interactive and ASCA provided a lot of snacks and drinks to share.
When we were planning for these meetings, we planned on having them every 3 months, however, the first meeting was so successful and everybody in the room asked to have another informal event within a few months. Hence November was picked and everybody agreed on having an event away from the hospital settings. For November, we agreed to have a Docklands outing for bowling or a Melbourne start ride. The next meeting will be on 30th November at 12 pm. These meetings are sponsored by Novartis for the year 2019 – 2020. ASCA would like to thank Novartis for the sponsorship.