Melody's MS Journey to Russia

Hi, my name is Melody and I have multiple sclerosis (MS). A few weeks ago I found out I have been accepted for HSCT treatment in Russia in July this year which is an exciting and also nerve wracking prospect.

I am a 42 year old mother to three beautiful children - Jock aged 10, Daniel aged 7 and Bonnie aged 5. I am supported emotionally, financially and sometimes even physically (especially if there are stairs involved) by my wonderful husband, Jon.

I was diagnosed with multiple sclerosis ten years ago shortly after returning to work when my eldest child was 8 months old. One day I woke up and I just couldn't speak properly. I was slurring my words but more importantly I could not grasp the words I wanted to say or I was just saying completely random words. It was like I was staring into the word fridge and it was totally empty. Or to take the analogy further I was reaching into the fridge for milk and pulling out broccoli. Other things happened then too that were horrible but not as immediately obvious - I was bone crushingly tired, my ability to concentrate and my short term memory were just gone. I lost control in my right hand and I remember sitting at work just staring at my hand on the number pad willing it to press the right numbers and watching in horror as it jerkily pressed other numbers. My speech problems and right hand cleared up within a week but during that week all I could think was "how can I hide this? I can't let anyone know that I can't do my job." It was months before my concentration and memory returned to anything approaching normal.

Since diagnosis I have had a number of mild relapses that have mostly cleared up on their own - patches of numbness on my face, legs and head, black spots in my vision, bladder urgency and conversely bladder hesitancy most of which I've managed to hide. But I can't hide the fact that I walk with a limp which has slowly been getting worse over the past four years. I can't hide the fact that I have to walk very slowly and carefully because a) I don't have the energy or ability to walk faster and b) I have learnt that it really hurts when I stumble and fall. Without treatment there will come a time when I will no longer be able to walk or drive and that prospect is terrifying.

I was very fortunate to have had a quick referral from my GP after my initial relapse, an MRI performed almost immediately and then the very speedy, although crushing, diagnosis of multiple sclerosis.

Multiple sclerosis is an autoimmune disease. Autoimmune diseases are where the body's immune system mistakenly sees the body's healthy tissue as a foreign invader and attacks it. If you have rheumatoid arthritis then your joints are affected, if you have Hashimoto's then your thyroid is affected. And in the case of multiple sclerosis it's the myelin, which is the protective layer around your nerves. When the myelin is damaged then the information travelling between the brain and the nerves is slowed or stopped and it can affect anything - speech, sight, cognitive function, mobility, bladder and bowel function.

In New Zealand there is no cure for multiple sclerosis - just a (hopefully) slow slide into permanent disability.

HSCT or Hematopoietic Stem Cell Therapy is a treatment successfully used overseas to "reboot" a patient's autoreactive immune cells. The treatment will involve harvesting stem cells from my blood, followed by chemotherapy to eradicate my immune cells before reintroducing the stem cells to rebuild my immune system. I will stay in the hospital for a month for treatment until I'm well enough to travel home and then I'll complete my recovery in New Zealand with the support of my family and friends.

The total cost for treatment is around NZ$100,000, including hospital treatment and my flights, and also flights and accommodation for Jon who will come over for the final week of treatment and help me travel home.

I will be having treatment at the Pirogov National Medical Centre in Moscow. They have performed this procedure to over 800 patients with an 80% success rate - that is, for 80% of patients who receive treatment there is no further progression in their disease. For many of these patients there has also been a return of lost functionality. For someone staring into the darkness of a future of pain and disability, that's an amazing light of hope. For the past ten years I haven't let myself think too deeply about the future because it's so bleak. But I'm starting to imagine a future not limited by multiple sclerosis. And that's a really exciting and emotional prospect.

Any contribution you can make would be greatly appreciated.

Thank you, Melody xx

To view my video please go to: https://www.facebook.com/MelodytoRussia/