My MS journey to Moscow and beyond
Donation protected
In 1996, I was 18, peak age of life, facing exams, exhilarated by life. And then I was diagnosed with multiple sclerosis (MS).
My first MS episode was actually during exams; the symptom optic neuritis. One moment I was looking at an exam paper, the next I was blind. Suddenly, shockingly, senselessly. I froze. What was happening?
This first thing that came to mind when I was diagnosed with MS was a wheelchair. It was an image that stuck in my mind from primary school - when I did the MS Readathon. It was all I really knew and now it was my future.
I convinced myself I would beat the disease, training hard at the gym, thinking I could beat it if I was super fit and healthy.
I avoided researching the disease on the internet as I didn't want to see or read anything negative. The voice in my head was on auto-repeat – this is not happening to me, not happening, NOT to me!
For this same reason I kept my news to myself, not even telling my family. I didn't want anyone feeling sorry for me or treating me any different. I didn't want this MS label – I was still little Anna. I wanted to live my life and be happy!
Ten years in and was I still well – no one would ever know I have MS – my plan was working. I was travelling around the world and loving life.
Then the reality hit when I was 30 years of age. The disease was affecting my physical body and my mobility. The left side of my body was weakening and my left foot started to drag. I have an MS symptom called foot-drop where the nerve damage in my leg doesn’t allow my ankle or toe muscle to flex and lift. I can no longer run or go for long walks.
Sure I wear a smile on my face most of the time and most of the struggles and challenges I face are invisible to you, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up.
Inside I get angry, fearful, depressed and scared. I'm no longer in control of my body and my future scares me. My life is changing every day and I don't know what tomorrow may hold.
To my huge relief, the advances in medicine, through stem cell treatment, have given me hope. The only negative is this treatment is not available in Australia.
The recent 60 Minutes special highlighted the success of this treatment, offered in Russia, on MS sufferers like me:
https://www.9now.com.au/60-minutes/2016/clip-ciun74mv2000t0hpfn5sqghiv
After being on the waiting list for treatment in Russia for 2018 or later, I have suddenly been offered a spot in January 2017. I am so excited to have a treatment date but the only problem is the cost. My old plan was to save the money myself but now I don’t have the time and need some help.
To get to Russia, get the treatment, go through recovery and return to Australia and to work I need to raise approximately $80,000. This is the kind of request and the kind of outreach I never imagined having to make but it’s happening so I am facing it and I am doing it. If you feel you can help in any way I will be forever in your debt, in a way you –fingers crossed – can probably not imagine.
Thank you for thinking of me and supporting my journey. I’ll be thinking of you from Russia with love.
And I’ll be grateful every day of my life.
My first MS episode was actually during exams; the symptom optic neuritis. One moment I was looking at an exam paper, the next I was blind. Suddenly, shockingly, senselessly. I froze. What was happening?
This first thing that came to mind when I was diagnosed with MS was a wheelchair. It was an image that stuck in my mind from primary school - when I did the MS Readathon. It was all I really knew and now it was my future.
I convinced myself I would beat the disease, training hard at the gym, thinking I could beat it if I was super fit and healthy.
I avoided researching the disease on the internet as I didn't want to see or read anything negative. The voice in my head was on auto-repeat – this is not happening to me, not happening, NOT to me!
For this same reason I kept my news to myself, not even telling my family. I didn't want anyone feeling sorry for me or treating me any different. I didn't want this MS label – I was still little Anna. I wanted to live my life and be happy!
Ten years in and was I still well – no one would ever know I have MS – my plan was working. I was travelling around the world and loving life.
Then the reality hit when I was 30 years of age. The disease was affecting my physical body and my mobility. The left side of my body was weakening and my left foot started to drag. I have an MS symptom called foot-drop where the nerve damage in my leg doesn’t allow my ankle or toe muscle to flex and lift. I can no longer run or go for long walks.
Sure I wear a smile on my face most of the time and most of the struggles and challenges I face are invisible to you, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up.
Inside I get angry, fearful, depressed and scared. I'm no longer in control of my body and my future scares me. My life is changing every day and I don't know what tomorrow may hold.
To my huge relief, the advances in medicine, through stem cell treatment, have given me hope. The only negative is this treatment is not available in Australia.
The recent 60 Minutes special highlighted the success of this treatment, offered in Russia, on MS sufferers like me:
https://www.9now.com.au/60-minutes/2016/clip-ciun74mv2000t0hpfn5sqghiv
After being on the waiting list for treatment in Russia for 2018 or later, I have suddenly been offered a spot in January 2017. I am so excited to have a treatment date but the only problem is the cost. My old plan was to save the money myself but now I don’t have the time and need some help.
To get to Russia, get the treatment, go through recovery and return to Australia and to work I need to raise approximately $80,000. This is the kind of request and the kind of outreach I never imagined having to make but it’s happening so I am facing it and I am doing it. If you feel you can help in any way I will be forever in your debt, in a way you –fingers crossed – can probably not imagine.
Thank you for thinking of me and supporting my journey. I’ll be thinking of you from Russia with love.
And I’ll be grateful every day of my life.
Organizer
Anna Tsirmiris
Organizer
Thornbury VIC
