Connect with TASCA: Latest News and Updates
Phone: (03) 7015 5637
Email: Info@tasca org au Address: Room 44, Barry Neve Wing Moorleigh Community Village Bentleigh East, Vic 3165 Australia
TASCA acknowledges Australia's first people as the traditional custodians of the land on which we meet and provide our services to those affected by genetic haemoglobin conditions. We pay our respect to them and their cultures, and to elders both past and present.
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SallyBarton HealthPromotionOfficer ThalassaemiaandSickleCell Australia
Sickle Cell Anaemia is a genetic blood condition that affects millions worldwide, particularly those of African, Mediterranean, Middle Eastern and Indian descent. Individuals with Sickle Cell produce abnormal haemoglobin, leading to red blood cells that can become rigid and crescent-shaped (like a sickle), hindering their ability to carry oxygen around the body and causing them to get stuck in blood vessels. This can lead to severe pain episodes and co-morbidities.
There are treatments available that help people manage and live with the condition. These treatments relieve pain, prevent infections, minimise organ damage and control complications. Treatment can include medications such as pain relievers and hydroxyurea, red blood cell exchange, and other necessary options.
From our Health Promotions Officer
In Australia, as in many countries, individuals and families affected by Sickle Cell face unique challenges. The journey often involves managing chronic pain and advocating for appropriate care and resources. It's essential, therefore, that we use World Sickle Cell Day not just as a moment of reflection, but as a catalyst for action.
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SPHERE - SPOTLIGHT ON THALASSAEMIA
The Sydney Partnership for Health, Education, Research and Enterprise (SPHERE) is putting a spotlight on Thalassaemia patients and their healthcare gaps. They are eager to hear about patients’ and carers’ stories, their experiences, and difficulties with the healthcare system, most importantly when they transition from paediatric to adult care. They’d like to know, what can be changed? What can be done better?
Patients from regional and remote areas, and from all backgrounds welcome. SPHERE aim to bring their experience and share them with our policy-makers for better care provision.
Participants will be interviewed by a member from SPHERE through a virtual meeting. No personal details will be collected.
You can contact Kristine Concepcion, k.concepcion@unsw.edu.au for more information.
NEW APHERESIS MACHINE AT NORTHERN HEALTH
Since April this year, Northern Health offers Apheresis as a service. Led by Head of Clinical Hematology, Dr. Rachel Cooke, nursing staff at the Oncology and Medical Day Unit, located at Northern Hospital Epping, have been trained to use the cutting-edge Spectra Optia Apheresis machine, pictured right.
The process of separating whole blood into its vital components, is called Apheresis, derived from the Greek word meaning “to remove or separate a part from the whole.”
Red Cell Exchange: This technique treats sickle cell disease by replacing abnormal sickle cells with healthy red blood cells.
“Patients in our community no longer face the burden of traveling to other hospitals for apheresis treatments,” she says. Pictured: Tess Roeg (kneeling), Melissa Gwynne, Rachel Cooke, Dalia Joseph, Nisha Poly and Anna O’Brien (patient).
Above is an extract from the full article, used with permission, from Northern Health, which can be read at the link/ QR code (right)
LIGHT UPS
LANDMARKS across Australia were lit up red for World Sickle Cell Day on 19 June to shine a light on the rare genetic blood condition, promoting equitable access to treatment for those living with sickle cell anaemia and to break down stigma in the community.
As the nation’s peak patient advocacy body, we coordinated this event to raise awareness of the condition Globally, it is estimated that 275000 babies are born every year with SCD and that this will surpass 400000 by 2050 This day holds immense significance as we come together to raise awareness about sickle cell disease and show our support for those living with this condition
World S y
Light Ups Light Ups Light Ups
Riverlinks Eastbank, VIC
Monash Park Tree, VIC
Drum Theatre Dandenong, VIC
Civic Centre, Monash, VIC
City of Glen Eira Town Hall , VIC
MCG, VIC
Catenary lights Geelong, VIC
Lane Cove Tunnel (Sydney), NSW
City of Newcastle Clocktower, NSW
Kurilpa Bridge, QLD
Story Bridge, QLD
Victoria Bridge, QLD
Reddacliff Place Steam Sculptures, QLD
Wickham Terrace architectural wall, QLD
Breakfast Creek Bridge, Newstead, QLD
Riverbank Footbridge, SA
Palmerston Water Tower, NT
Palmerston Recreation Centre, NT
Frances Drive Light Pole, NT
Matagarup Bridge, WA
Sky Ribbon Bridge, WA
Mount Street Bridge, WA
City of Perth, WA
Telstra Tower, ACT
City of Launceston Town Hall, TAS
Tasman Bridge, TAS
Story bridge
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“No one is perfect because we are all special and unique!”
By Gaziel Rouma 7A
Us humans always have something going on inside our heads or body, we may look good and fine from the outside but what matters is what's on the inside. Humans like us get judged and spoken about only from what they see usually from the outside but there is more than just our face, actions and looks. We all have different bodies which means we can all have different health issues or conditions. We all have our own personalities, problems and differences so why is it that some people judge us from how we act? Others don't know who we really are, they don't know that we have a good heart, make people laugh, smile and most importantly love from the heart. I'm Gaziel Rouma and I have Sickle cell anemia, I wasn't only just talking about me and the other people who have it, no, I'm talking about everyone.
As a girl who has had sickle cell anemia ever since she was 6, it has always been difficult. Sickle cell anemia is a medical condition that involves sickle cells, and it isn't as easy as it sounds. I always have to be mindful of my body, my physical actions and my hydration and health, which isn't always easy. Sometimes it feels as if you have more responsibilities for your medical condition, but it isn't something to be ashamed about besides, I look up to it as something special. Surely more responsibilities don't make us better, no it makes us stronger, realise that we are capable of doing lot's of things. It doesn't mean that other people aren't as capable, no, it means that we are all special in our own ways, bodies, capabilities, strengths and personalities!
It's strange how things go on through your blood and cause damages without you even realising it. It's like how people's emotions can change within one second, one word or one issue. We all change but change isn't always bad if you think about it If I didn't go to all my doctor's
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appointments and miss out on fun activities like sport and running for 2 years when I was little, then I wouldn't have recovered! If I didn't stay in the wheelchair for a couple of months last year, then I would have NEVER in any time soon recovered. This all took patience, tears, pain, commitment, determination, responsibility and respect If you ask me right now how many blood tests or needles have gone into my body, believe or not I don't know because the amount I have gotten are LOTS and LOTS!
Its sometimes is annoying how you see everyone around you, smiling, doing what they want, while I'm over here with restrictions for my health. It's heart breaking but then again, it's for the best of my health and I will tell you the number of questions I've been asked like "why are you in a wheelchair, if you can walk?" It's a bit like your being judged from the outside again but not from the inside, I get that kids wonder and get confused so what I say is the truth. "My hip is weak, and I am not able to walk long distances so that's why I am in a wheelchair." It's nice to see how people around you, are all different, no one is the same, surely, they might look alike but everyone's heart and personality is different. I love when I see a lot of people that you don't even know, still care about you. Like sometimes different people surprise you sometimes without even knowing them.
All the people that have helped me in my life, not just my medical condition but in my life, are very valuable to me and have my support, care and love. We should always care for each other no matter who we are because we are all different, special and unique.
Thank you Gaziel for sharing your
