Daniel Debono – Advocate

I was formally diagnosed with Remitting Relapsing MS in 2016. In the days leading up to my 32nd birthday, while driving home from work, I experienced a sudden onset of double vision/diplopia. Out of nowhere, my brain thought that the truck driving towards me on the other side of the road was now directly in front of me. Luckily, I didn’t crash the car, and decided to drive the rest of the way home with one eye closed – silly I know.

Straight away I assumed the worst. I recalled memories of people suffering from an insidious disease who were are at the worst end of the disability scale. Without any delay, I hit the internet and medical journals seeking more information on treatment options and outlook. I discovered the Overcoming Multiple Sclerosis (OMS) programme, and overnight my wife and I completely changed our lifestyle. We moved to a plant-based wholefoods diet, vitamin D supplementation, more exercise and meditation. These lifestyle changes completely improved my overall health and wellbeing exponentially.

From the beginning I chose to wear my illness on my sleeve and had no qualm bringing my friends, family or employer in on the fact that I had MS. Everyone, including my employer at the time, was nothing but supportive. That became a true source of strength for me.

I reviewed the available disease modifying treatments (DMD’s) and ultimately decided not to go down that path as I wasn’t comfortable with the efficacy, side effect profile and, as I am JC virus positive, the risk of PML (Progressive multifocal leukoencephalopathy), a rare and often fatal viral disease characterized by progressive damage or inflammation of the white matter in the brain. Further to that, it seemed to me that the DMD’s may help slow progression, but ultimately, they won’t stop it. OMS was to me my DMD, and I was going to give that a shot.

Everything was going well until the start of 2018 when my MRI started to show further progression. As the year progressed my MRI imaging was getting worse and I started to experience fatigue, nerve spasms (transverse myelitis) in my right leg and up my spine along with a burning sensation in my right leg.

My neuro referred me to Dr Ian Sutton at St. Vincent’s Hospital in Sydney for a consultation relating to stem cell transplantation (Dr. Sutton is running the Australian HSCT trial), as from my research, AHSCT (autologous haematopoietic stem cell transplantation) seemed to have a very high efficacy in MS. Dr Sutton confirmed that I would be a good candidate, however I would need to try and fail at least two DMDs, progress on the disability scale and then become an Australian Citizen before I would be considered for treatment in Australia! On return to NZ, I explored HSCT treatment options around the world and applied to clinics in Australia, Singapore, United States, Canada, Mexico, England, Germany, Switzerland and Russia.

All HSCT centres turned down my application, except for Mexico and Russia, due to the fact I had not tried and failed at least two DMDs and become more disabled. Dr Denis Fedorenko and his team at the A.A Maximov in Moscow Russia reviewed my medical history and accepted me for treatment at the end of January 2019. This caught me off guard as I wasn’t expecting to be offered treatment so soon plus the prospect of travelling to a non-English speaking country for a seriously gnarly procedure was terrifying. I recall looking for an excuse to delay it i.e. see if things settle down on their own. But ultimately made the call to hit it hard and hit it early.

In the end I chose Russia over Mexico, as I had seen the stories of HSCT warriors that had gone before me and they all spoke highly of their experience in Moscow. Furthermore, the big difference between treatment in Russia vs Mexico is that you are an in-patient in a dedicated transplant unit in a major Hospital in Russia vs a private outpatient facility in Mexico. In Russia you land, they pick you up and go to the hospital where you essentially ‘check-in’ to your room on the ward. You stay in that ward until discharge with all of your requirements taken care off by an incredible team of health professionals. In Mexico you stay in a private apartment near the treatment clinic and are not located within a major hospital.

The next 5 months went really fast. A bit of work was required confirming our travel arrangements, getting pre-approval from my Health insurer and undertaking a bit of physical prep (dental check, blood work, vaccinations etc). My health insurer agreed to provide funding towards the treatment, however I still needed to fund over half of the treatment cost myself. The total cost of treatment was around $50,000 USD +additional for flights.

I was fortunate that my employer was willing to give me two months off to undertake treatment and recovery when I got home. Even better, my wife was also able to come with me. Many people travel to Russia on their own for HSCT, however I can’t imagine how much more challenging the treatment would have been without her by my side.

I arrived in Moscow with a right leg that was constantly giving me grief – try to imagine every few steps you receive a powerful electrical surge to your leg and then sometimes, as a result, your leg gives way completely (technical term for this symptom is transverse myelitis). Add to this brain fog and fatigue caused by all the neural compensation that was going on (they counted 43 lesions on my brain) and you arrive at an EDSS score of 3.5. I departed Moscow with zero fatigue/leg symptom and a mind that is so sharp and clear – I can’t recall the last time I experienced this. Now 6 months on my EDSS score is 1 and my latest MRI has shown NO evidence of disease activity (NEDA) in my brain or spine, and, it would appear that a lesion around 5mm in diameter has disappeared!

We documented the entire experience on a Facebook page called Dan’s Russian Reboot. You’ll find a number of explainer posts about the science, as well as local info. You can even watch the transplantation video in its entirety if you’re interested.

MS doesn’t define me but it has shaped who I’ve become today. Without it, my family and I possibly would never have discovered a plant-based lifestyle or fallen in love with Moscow. Perhaps I would never have had to face and overcome so much adversity. I certainly wouldn’t have met so many inspirational MSers who like me decided to take control of their health. I am richer for it. Kia Kaha.

To read more stories see My Story. My Strength. My MS.

 

 


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