CONTENTS
From the Chair - Pg. 2
Hobart Trip - Pg 3
Mildura School Presentations - Pg 4
Federation UniversityPg 4
Blood Drive - Pg 4
Thalassaemia Research Study - Pg. 5
Nutrition in Thalassaemia - Pg 6
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 and custodians of the land on which we meet and provide our services to those effected by genetic haemoglobin disorders We pay our respect to them and their cultures, and to elders both past and present
Stay connected, stay informed, and look forward to our monthly newsletters!
TASCA MONTHLY
PatBollard Chairperson, ThalassaemiaandSickle CellAustralia
Another busy month has come and gone for all of us here at TASCA.
We have continued to focus on advocacy and education both within Victoria and interstate, as you will read here.
This month’s newsletter also contains information around nutrition and optimal strategies for healthy eating Thank you to Lily our Genetic Counselling student from the University of Melbourne for her work.
I have been working with TASCA New Zealand and the Thalassaemia International Federation, to create a network of support groups in the South East Asian region. This arose from the fact that we, countries from this part of the world, do not register on any data sets, as was evident at last year’s TIF conference It is also one of the reasons why our patients do not have equitable access to new or alternate treatments and therapies. We have connected with TASCANZ and also TASCA Singapore, with a view to including Malaysia and Indonesia in this group. Stay tuned for more information.
If you have any questions or concerns please do not hesitate to contact me on 0408341331 or by email at chair@tasca org au
From our Chair
We hope you enjoy reading this newsletter and, as always, we look forward to your feedback and input.
Pat
TASCA MONTHLY
HOBART TRIP
On July 3rd-4th, TASCA Chair Pat Bollard and our Health Promotion Officer Sally Barton visited patients, clinicians and Lifeblood’s State Representative to discuss our advocacy, education and support work.
We were warmly welcomed at the Royal Hobart Hospital and Children’s ward It was also heartening to see and hear about the work undertaken by Lifeblood in their drive to engage more donors.
It was also great to meet Thalassaemia Patient and family member Catherine and Gianna.
TASCA MONTHLY
MILDURA TRIP
Sally also visited Mildura this month, to engage with high school students through a series of school presentations During her three-day stay, she focused on educating students about the genetics of haemoglobin disorders, the significance of blood donations, and family planning considerations related to these conditions.
TASCA is committed to offering free school presentations that align with the VCE Biology curriculum and includes information on:
Thalassaemia and Sickle Cell Anaemia and its genetics
Autosomal recessive inheritance and Punnet squares
Current medical research
Prevention strategy
Patient experience
Importance of blood donations and genetic testing
FEDERATION UNIVERSITY
With the support of our dedicated volunteer, Comfort, we recently attended Federation University in Berwick to promote community awareness through our TASCA stand.
BLOOD DRIVE
TASCA’s interstate blood drive has now concluded. We would like to thank all those who participated and contributed to our cause.
TASCA MONTHLY
Research Study: High-cost gene therapies: understanding patient, consumer and societal values, perceptions and preferences
Researchers at the University of Sydney are conducting a research study to find out what people with particular blood conditions, and their families, think about gene therapy. They will hold face to face and online focus groups and interviews to hear participant views. Ultimately, this information will help to inform government decision makers in their assessments of new gene therapies.
The Researchers are seeking adults with haemophilia B (Factor IX deficiency), betathalassemia or sickle cell disease and/or
on understanding patient, consumer and societal values, perceptions and preferences Focus groups or interviews will be 1.5 hours long, with face to face sessions planned for greater Sydney, Melbourne and Brisbane areas. Online options will be available for those who are unable to participate in person If you choose to participate, you will be reimbursed for your time, and for your travel costs for face to face groups.
Please contact Professor Kirsten Howard, Menzies Centre for Health Policy and
THALASSAEMIA
Thalassaemia International Federation (TIF) recently published a resource called “Nutrition in Thalassaemia; A Guide for Patients, Families and Caregivers (2024)”. Information from this guide has been summarised over the next two pages.
EatNutritious
Eat a balanced diet full of macronutrients including carbs, protein and fats as well as micronutrients such as required vitamins and minerals
Beawareofother
Food Healthconditions
Other health conditions can create nutritional complications for thalassemia individuals. These can include osteoporosis, kidney stones, heart disease and diabetes.
A nutritional assessment with an expert who will check your measurements, health, blood tests and current eating habits to tailor your diet to meet your needs.
To meet your needs, you may have to supplement. Important vitamins for thalassaemia individuals to know are iron, calcium, folate, zinc and vitamins C, D & E
Nutrition and health conditions can be affected by our behaviour, so it’s important to live a healthy lifestyle This includes regular exercise, drinking enough water and no smoking.
NUTRITIONAND THALASSAEMIA
It is important to discuss your nutritional needs with your medical team and not make changes without clearance from your doctor It is encouraged to see a dietician alongside your health management team to ensure all your nutritional needs are met The dietician will be able to cater to everyone’s different needs Some vitamins that may come up in this assessment and are important to be aware of are listed below:
Calcium
An essential mineral crucial for healthy bones, muscle activity, blood clotting and aids in nerve and hormone function Calcium is commonly found in dairy products and tofu as well as some green vegetables, such as kale
Folate
Individuals with thalassaemia have a high turnover rate of red blood cells, and folate is a nutrient that helps create and divide new cells Folate can be found in dark leafy greens and green vegetables such as brussels sprouts and peas A diet rich in folate is encouraged in the general population, however individuals with non-transfusion dependent thalassaemia may need to consider supplementation
Iron
Iron is an essential nutrient in the body and is involved in making red blood cells, proper muscle functioning, and several other chemical processes in the body. Too much iron in the body is harmful and this can be an issue for people with Thalassaemia. Individuals with Thalassaemia have their iron levels closely monitored and regulated by their medication and health team
VitaminC
Vitamin C is is found in citrus fruits, strawberries, bells peppers, tomotoes as well as other sources It is an important vitamin and antioxidant that helps in wound healing and iron absorption As vitamin C has an impact on iron, its important to discuss intake with a doctor and not take supplements without consulting your doctor first
VitaminD
Helps the body absorb calcium and important for bone strength Vitamin D can be found in some foods such as fatty fishes, as well as absorbed from the sun
Works alongside vitamin C to help heal the body and protect against stress Vitamin E can be found in foods such as vegetable oils and nuts VitaminE
An important mineral for our immune system and aids in protection against infection, but is also involved in growth, puberty and bone health. It can be found in food that is often protein rich such as beef, chicken, and beans.
You can read the full resource from TIF at this link:
IronGIVE TASCA A VOICE AND BECOME A MEMBER TODAY
You can help support TASCA and its valuable work
You can be inspired by stories about the people we support You will be updated regularly on medical advances and clinical trials.
You will be invited to member events and programs. You will belong to a community supporting people living with a genetic haemoglobin condition
You will be part of a community voice advocating for better access to medical care.
Your membership will support Thalassaemia and Sickle Cell Australia’s important work
As a not-for-profit organisation, we need the support of the community to provide ongoing education, support and advocacy for the benefit of those living with, or touched by, genetic haemoglobin conditions
Membership is open to all interested individuals and organisations who want to support our mission.
