By Martina Simos
Adelaide family therapist, Helena Kollias, is on a mission to help others suffering from kidney disease by raising funds for kidney research.
She spoke to The Greek Herald about her personal journey with chronic kidney failure and how it hasn’t stopped her from setting goals and embracing life’s journey.
As a youngster growing up in the Riverland – a fruit growing region about 300 kilometres from Adelaide, South Australia – Helena loved the outdoors and the country life. She also had a love of music and has continued to play her beloved piano to this day.
Her family were part of a large Greek community where many Greeks had migrated in the late 1950s and 1960s in search of a better life.
“When I was a child, I wanted to play piano, but I wasn’t given the opportunity,” Helena says.
“Instead, I was encouraged to play the didgeridoo. I became quite proficient and went around the country towns with my school groups playing in concerts.
“When I later learned that it is considered disrespectful to play the didgeridoo if you’re not an Indigenous person, I decided to stop playing the didgeridoo and start learning the piano, which was always my first love.”
Helena’s life changed dramatically at the age of 15 when she became very ill. The doctors in the Riverland were unable to diagnose her condition. It wasn’t until a visiting doctor was in the area and diagnosed her with lupus nephritis.
Helena became very sick and was rushed to the Women and Children’s Hospital in Adelaide.
“I was cold and tired all the time, even in the peak of summer,” she says.
“I also had high fevers. No-one believed I had a problem; they thought I was just being lazy or was depressed.”
Lupus nephritis was considered a rare condition for someone that young, so she moved to Adelaide to live with her aunt and older sister so she could receive treatment.
Her parents and siblings stayed on in the Riverland and eventually moved to Adelaide six years later once their fruit block was sold.
“At the time of my diagnosis, the doctors were shocked because they hadn’t heard of a child having lupus before,” Helena recalls.
“This was a rare occurrence at that time, but it has become more common.
“Research has since shown that it wasn’t as uncommon as they thought because they can now trace the onset of lupus back to childhood and it is inherited from the mother.”
To complicate matters, Helena also contracted sepsis which led to chronic kidney failure. She was given large doses of cortisone when first diagnosed and then began dialysis treatment three times a week from the age of 17 to 20.
This also involved a monthly transfusion and a kidney transplant at the age of 20 in the late 1980s. A few years later, Helena was given the news that the kidney transplant was being rejected and that she would be on dialysis in two years’ time.
Making a choice to travel:
Undeterred, she decided that instead of going to university she would travel, visiting America and even living in California for seven months on her own.
After her long holiday came to an end, Helena went on peritoneal dialysis and proceeded to plan another holiday that lasted three years with the last stop being Japan in 1999.
“The first kidney was toxified by the early anti-rejection drugs, so I had another kidney transplant in 2000 and decided it was time to go back to university and study,” Helena says.
“I still have that kidney today.”
Helena is now working part-time as a family therapist, primarily helping children with severe intellectual disabilities, but she also finds time to raise funds for a cause close to her heart.
The fundraising champion:
Since 2019, at the height of the COVID-19 pandemic, Helena began fundraising for Kidney, Transplant and Diabetes Research Australia.
“Raising money for vital research is important to me because I have lost friends to kidney disease and diabetes, and I wouldn’t be here today if it wasn’t for the research that has been conducted to date,” she says.
“We have come a long way since I was diagnosed with kidney disease at 15 years of age, but there is still more that can be done.
“For example, when I had my first transplant, the anti-rejection medication had a 75 per cent risk of causing cancers but that is now down to 5 per cent. That is an incredible achievement but with the help of research we can eradicate the risk completely.”
Helena credits her team of dedicated volunteers – Marianna Spiniello, Mung Pham, and Mark and Kerry Harrigan – with successful fundraising.
“Marianna and her family are major sponsors of all my fundraising,” Helena says.
“As well as helping at the functions and attending meetings, Mung looks after most of our administration. Marianna and her family are also always very generous with donating prizes.”
To date she has raised $127,932 for Kidney, Transplant and Diabetes Research Australia.