Personal Stories

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Personal Stories of Reflection, Resilience and Achievement

The following are stories from patients (or family members & friends) living with thalassaemia, sickle-cell disease and black-fan diamond. The Thalassaemia Society of NSW would love to hear from members, patients and friends about their experience of living with sickle-cell, thalassaemia or other haemoglobinopathies. Stories of challenge, determination, success, achievement and hope. Please contact the Cooridnator at


Chasing the American Dream by Anna O'Young

2016: For many patietns travelling overseas is a huge challenge. Anna shares her highs, lows, frustrations, challenges and joys at trying to chase her dream and live overseas. Read here.

Maya's story  

2016: The more I thought about it, the more it came clear to me, that as a carrier of Thalassemia I should support the Thalassemia Society of NSW! Read here.

The Three Musketeers by Arthur Bozikas

2014: 53 years ago, just after I was born at Crown Street Women's Hospital in Sydney, I was diagnosed with a rare genetic blood disorder called beta thalassaemia major ... These days, it’s inspiring to see all the many young thals I’ve been fortunate to come across over the years. Some have even achieved prominent positions such as police officers and bank staff, and even become parents, and the stories I come across of their triumphs and tribulations are really encouraging. I admire them all because they don’t have the 'stunned deer in the headlights' stare that I once shown at a time of uncertainty and trepidation. Read here

2017 - Blood Brothers: Radio Program talking with Peter Karamihalis and Arthur Bozikas

Now in their fifites, they met as kids getting monthly blood transfussions - they've been through a lot together. Ans they have a pretty special bond...  Listen here

Note: This story is about 22 minutes into the program, you can scroll to 22 minutes.

Why It Pays to be Vulnerable

2013: What I want you to know is this: when you air out your dark secrets, you expose them to light. This allows them to vanish. The sooner and more frequently you expose them, the faster they disappear. Read here.

Daniella Macolino, Actress Living Her Dreams

2016: Daniella Macolino is a 24 year old actress who pursues her dreams each day while living, and thriving, with thalassemia major. Daniella shares an inspiring story. Provided by Cooley's Anemia Foundation: (CAF). Read here

One Patient's Story: Living with and Learning from Thalassemia by Aaron Cheng

2010: High school student Aaron Cheng shares a speech about thalassemia which he recently delivered to his classmates.  We share this inspiring testimony with you. Provided by Cooley's Anemia Foundation: (CAF). Read here

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