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 coordinator@thalnsw.org.au

 

1 - Chasing the American Dream by Anna

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

2 - 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.

3 - 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.

4 - Sickle cell aside, Chesapeake woman making her way in NYC modeling scene

2017: Vick challenged Barber to step up her game for the summer. Aim for 12 bookins in three months. She clinched 19. She had to return to Viginia to compelte her nursing degree, but it was clear she'd proven her modeling marketability and should plan for a permanet move. Read the NY Time article here

5 - A career inspired by the disease: Sickle-cell anaemia stories

2017: Cassandra Dobson, a registered nurse, was born in Jamaica with sickle cell disease. While she was taken to the local hospital for treatment, her mother also went to see the local witch doctor for advice. The witch doctor suggested changing Ms. Dobson’s first name as a way of changing her health. So, Ms. Dobson’s parents kept changing her name until she seemed to get better. Of course, sickle cell disease normally improves in cycles, and Ms. Dobson eventually became sick again.

In her early teens, Ms. Dobson moved to the United States. As soon as she disembarked from the plane, she had a severe sickle cell crisis. Rushed to Jamaica Hospital Medical Center in Queens, Ms. Dobson was treated for kidney failure and severe pain. She was given a blood transfusion to combat the disease. Ms. Dobson says that her worst symptom is fatigue, but by managing her overall health, Ms. Dobson has been largely able to avoid the strong painkillers that are so common in sickle cell care.  Ever since her treatment at Jamaica Hospital, Ms. Dobson has pursued a career in nursing. She is dedicated to improving the care of all of her patients, but particularly to increasing awareness of sickle cell disease and the best ways to treat its symptoms. Read & listen to other stories

6 - 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

7 - 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.

8 - 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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