Dr Helen Georgiou was born in Sydney in 1951, the child of proud Greek-Cypriot migrants who moved to Australia in search of a better life. Helen was diagnosed with Thalassaemia Major at three months of age at a time where there were few treatment options and short life expectancy.

Helen’s life was not defined by her medical condition. She had a passion for living life to its fullest. Helen spent her time building relationships with the Thalassaemia community, researching and learning about the human body as well as spending time with those who she loved and cared for. In recent years she met her current husband Jim, who moved from the United States to be with her. She is also survived by her loving cousin Pedro and his family.

In many ways her health was an important part of her life. Because of her strength and tenacity, her resolve and willingness to fight, Helen was able to live a healthy life to the age of 68. And only recently did she succumb to the condition that ultimately took her from this world.

Helen recently told her story to a student about the challenges of her early life in the 1950’s and 60’s, with transfusions every three to four months rather than the current practise of three to four weeks. She fondly remembered Dr John Colebatch, one of the few doctors of the time who believed in transfusions because of the medical advances that might be just around the corner.

In 1966, Helen became part of the first group of patients that started a new medical treatment to remove iron from the blood, called DESFERAL. This was a lifesaving treatment for those with THAL Major. Helen had suffered a heart attack at the age of 15 due to iron overload, but this did not hold her back or slow her down in life.

Helen was not the type of patient to allow doctors to take charge of her care, she was in charge – and she always needed to give active consent to any procedures and treatments.

READ MORE: MP Vamvakinou launches Australian Sickle Cell Advocacy

During those years, unfortunately people living with Thal Major had to put up with a lot of stigma and prejudice from the Greek and Cypriot communities. Helen and her Mum Lucy would have none of that nonsense! Many families chose to hide their status from family and friends and the community, out of fear of judgement, gossip, poor marriage prospects or even the stigma of ‘bad blood’. Helen’s philosophy was that everyone was to be treated equally, educating people that they needed to have a blood test to see if they are a carrier.

We are proud that because of the education, awareness and patient advocacy work undertaken by Helen and Thalassaemia and Sickle Cell Australia, attitudes in our community are changing.

Many of you know that, Helen made a meaningful contribution throughout much of her life as an advocate and mentor to many patients – her mantra was chelate chelate chelate – and most recently Helen served as President of Thalassaemia and Sickle Cell Australia. Helen served on many health-related boards and also mentored the younger patients.

She was more like a mother to so many of us. A feisty, knowledgeable, experienced, guiding hand not only to those in the Thal and Sickle Cell community, but to all people who she felt she could help.

In fact, you can speak to Professor Don Bowden or Dr Zane Kaplan and they’ll tell you just how willing Helen was to debate issues with them! Of course, she, like them, worked hard for the patients at the Medical Therapy Unit, along with Mary and Carolyn who formed a family of care around our community.

Helen was a health practitioner in her own right, practising Chinese medicine and was a proponent for complementary medicine. Her philosophy was that health starts with a good diet and exercise. She has helped many people get back on the path to health, her direct, no nonsense approach proved crucial to many.

Helen studied law and was near to completion. Her sharp mind and quick tongue meant she could have rivalled any Queen’s Counsel in the Supreme Court.

READ MORE: Thalassemia cure on its way

Helen was devastated after the loss of her mother in November. Helen in many ways made it her mission to stay healthy to ensure her mother received the best possible care. Living with Leukemia, Hepatitis C, which she contracted from an infected blood transfusion in the 1980’s, and a heart condition, all took their toll on Helen’s body. After life-long blood transfusions and iron chelation treatment, Helen was in a fragile state when she was diagnosed with Gillian-Barres Syndrome. This severely limited her mobility, and meant she was admitted into the care of Monash Medical Centre in February.

We have found it hard to accept Helen’s passing because she was a fighter. Helen has left a massive hole in our lives and in our hearts. She was so loved because she loved so many.

You will be greatly missed our dear friend and mentor.
Rest in peace, enjoy the reunion with your beloved mother.
Your friends in TASCA will honour your legacy by continuing your strong support, education and advocacy work.