TASCA Newsletter (Autumn 2020)

The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work!

Contents:

  • Mental Health Support for Patients
  • Chair’s Report
  • Australia Lit Up Red
  • National Blood Donor Week
  • Medical Infusion Unit Opening
  • Gina’s Birthday Fundraiser
  • Smart Apps and Anemia
  • TASCA Staff Changes
  • Online Chat Room for Teens
  • Genetics Workshops
  • Social Media Challenges
  • Upcoming Events

Want a physical copy? Let us know by sending a request through email.

You can also download a PDF copy.

View previous newsletters here.

[Media Release] AUSTRALIA LIGHTS UP RED FOR WORLD SICKLE CELL DAY

FOR IMMEDIATE RELEASE

DATE: 17/06/2020

AUSTRALIA LIGHTS UP RED FOR WORLD SICKLE CELL DAY

Melbourne, Australia: LANDMARKS across Australia are set to light up red for World Sickle Cell Day on 19 June to shine a light on the rare genetic blood condition unknown to many around the country

For the first time, structures including the Melbourne Star, Brisbane’s Story Bridge, Perth’s Trafalgar Bridge and Canberra’s Telstra Tower will light up red in solidarity for patients affected across Australia by sickle cell anaemia. More than 270,000 infants are born with sickle cell anaemia each year across the globe, and cases are increasing in Australia.

Thalassaemia and Sickle Cell Australia (TASCA), the nation’s peak patient advocacy body, has coordinated this event to raise awareness on the condition. TASCA is a not-for-profit organisation that has been serving Australians living with genetic haemoglobin disorders, and their families, since 1976.

Sickle cell anaemia affects the body’s ability to produce healthy red blood cells that provide oxygen around the body. Sufferers battle frequent, painful blood clotting episodes caused by the sickle-shaped blood cells and require lifelong blood exchanges.

Robbin Vissakodeti, TASCA’s Deputy Chair, whose wife and daughter both have a form of genetic blood disorders said, “For us, sickle cell affects our everyday lives. My wife had her spleen removed because of sickle cell complications and we have to take every precaution to prevent infections as her immune system is compromised.

“When we started thinking about having kids, I knew the risks and we were prepared. World Sickle Cell Day this year is about getting people to have that conversation with their doctors, being informed about the risk and making the right decision when it comes to having children.

“Hospital visits definitely take a toll on the family, but we are grateful that we live in a country with a supportive healthcare system. Treatment seems to be constantly improving and we are looking forward to what the future will bring.”

ENDS

For media enquires contact:

Samuel Lam, Thalassaemia and Sickle Cell Australia

E: hpo@tasca.org.au, T: 03 7015 5637

Notes to editors:

  • For more information on TASCA, sickle cell anaemia and World Sickle Cell Day, visit tasca.org.au.
  • Full list of sites that will participate in the light up include:
    • Melbourne Star (VIC)
    • AAMI Park (VIC)
    • Kingston Clock Tower (VIC)
    • Story Bridge (QLD)
    • Victoria Park (QLD)
    • Trafalgar Bridge (WA)
    • Council House (WA)
    • Canberra Telstra Tower (ACT)
    • Elizabeth Mall (TAS)
    • Kennedy Lane (TAS)
    • Railway Roundabout (TAS)
    • Franklin Square (TAS)
  • Thalassaemia and Sickle Cell Australia was established in 1976 and provides support and advocacy to those affected by genetic blood disorders.
  • Sickle cell anaemia is an inherited blood condition causing misshapen red blood cells called sickle cells. This leads to a reduction of useful red blood cells and anaemia. Sickle cells also result in painful and hospitalisable blood clots in many patients.
  • A simple blood test will show if couples are at risk of having a child with sickle cell anaemia.
  • Treatment for sickle cell anaemia include medication and blood exchanges.
  • Sickle cell anaemia is most common in people of sub-Saharan African, Indian, Middle Eastern and Mediterranean background. However, migration has spread this condition globally.

 

 

TASCA Newsletter (Autumn 2020)

TASCA Newsletter (Autumn 2020)The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work!

Contents:

  • COVID-19
  • Action Plan for Rare Diseases
  • Social Work – Monash Health Medical Therapy Unit
  • Mary’s Farewell
  • Lifeblood Teams Event
  • Australian Haemoglobinopathy registry
  • Uplift Project
  • Cards for Peter
  • Greek Festival
  • TASCA Family Day
  • Kids Page

Want a physical copy? Let us know by sending a request through email.

You can also download a PDF copy.