Dimitri Garbas vividly recalls that November 2017 morning when his life took an unexpected turn.
The Adelaide-based Greek Australian describes waking up not feeling 80 per cent of his body. Despite his condition, he admits he waited a couple of days before seeking medical help.
“I guess my generation and older generations get stuck in this ethnic mentality, sort of ‘something happened, it will be fine', it’s something on my back, all I need is rest and I will be OK,” Mr Garbas tells SBS Greek.
Highlights
- An Adelaide man shares his personal story of living with Multiple Sclerosis, an autoimmune chronic disease
- Three years ago, Dimitri Garbas decided to seek treatment in Russia planning to undergo Autologous Haematopoietic Stem Cell Transplantation
- A Monash University neurobiologist, specialising in multiple sclerosis research, explains why the treatment isn't available more broadly
That’s why, he says, he took the news of his multiple sclerosis diagnosis with a great deal of alarm.
“He [the neurologist] said ‘from the day you woke up like this, your life will never be the same'. It shook me.”
Back then, Mr Garbas worked as a Human Resources manager in a company and his wife Lisa was six months pregnant with their daughter.
Dimitri Garbas with 2-year old daughter Christine Source: Supplied
The family’s situation changed drastically with financial constraints adding extra pressure.
“I wasn’t able to move, I was using up my sick days until I had nothing left and I basically resigned from my job.”
Since then, he has managed to resume employment and the family has welcomed a new member, little Joseph.
Mr Garbas says it was a "miracle’ and a "massive surprise" given the doctors’ warnings they would be unable to conceive naturally due to the medication he is on.
‘Every day is a struggle’
But managing the chronic disease, he says, has taken a toll on his mental health.
In m, the patient’s immune system attacks what shields nerve fibers (myelin) disrupting communication between the brain and the body, potentially causing deterioration of the nerves or permanent damage.
The nature and severity of symptoms differ from patient to patient, including from weakness in limbs and problems with the vision to other disabilities.
With the medical community still in search of a cure, focus on mitigating and preventing damage on the nervous system, restoring function and managing the impact of symptoms to improve the patient’s quality of life.
“Every day is a struggle to get the energy and strength to get out of bed.
Dimitri Garbas with wife Lisa, daugther Christine and son Joseph Source: Supplied
“But there are things that keep someone going: your friends, family, your beliefs, the ability to see the good in every situation,” Mr Garbas says.
His hopes for a return to a "normal" life were revived when he first heard of the
, a treatment proven to be successful for a number of patients. However, it's still under research to establish sufficient data on its efficacy and safety.
Betting on a potential treatment
Steven Petratos, a Senior Lecturer of Pathology at Monash University, leads a research group in search of treatments for neurological disorders, including multiple sclerosis.
He explains how the Autologous Haematopoietic Stem Cell Transplantation is using the patient’s own stem cells, which are transplanted back into their body following chemotherapy treatment over a number of weeks.
“So the theory is, you’re getting rid of immune cells that will attack the brain and spinal cord and then when you’re transplanting them back in, they’re stem cells from your own origin and they can differentiate and produce normal immune cells again,” Dr Petratos says.
“It’s usually patients that are basically refractory to conventional therapy that look at this kind of therapeutics as an option. Unfortunately, it’s not for everyone, it’s usually only aggressive MS that is being treated with HSCT and it is still experimental.”
Current trials are running in Melbourne, Canberra and Sydney with a small number of patients involved.
According to Dr Petratos, clinics in places including Russia and South American countries, where the requirements for undergoing this treatment are relaxed, tend to present the "positive data”.
“We do get positive outcomes in Australia too but they need to be balanced with the negative outcomes that occur […] which is not necessarily advertised as well.”
Having met patients who successfully underwent the treatment, Mr Garbas made the decision to try it.
Source: Supplied
For the last three years, he has been running a campaign to raise funds to pay for the procedure at a clinic in Russia.
“A lot of people think that with modern medicine the disease is easy to contain and people live very normal lives. But every single MS sufferer is different, no two people are the same,” Mr Garvas says.
Dr Petratos points to this heterogeneity of the disease arguing that “not every patient responds to the same treatment appropriately” and that the Autologous Haematopoietic Stem Cell Transplantation (HSCT) is not an exception.
“The major complications [with HSCT] is that you get opportunistic infections and some of these can be quite severe. The other complications you can get are bleeding disorders, liver damage and you can also die from these of course.”
He adds that the treatment could also facilitate the development of future cancers, stressing that the chemotherapy agent significantly depletes the patient’s immune system.
But Mr Garbas is willing to take his chances.
“I don’t want to manage these symptoms anymore stuck in a chair injected with chemicals.
“I’ve got to give it one shot and if it works amazing, if it doesn’t, well so be it. But at least I’ve tried, at least I’ve done everything in my power to make sure I can get better.”
