Victoria's Race for Stem Cells #HSCT4Vic

 

Hi, I’m Victoria and I have Multiple Sclerosis.

 

 

I was officially diagnosed with M.S in May 2020 at the age of 37 while working in Hong Kong. However, looking back now I can see that I had been living with it and forcing myself through symptoms for years, becoming progressively worse most recently.

 

 

I’ve lived a pretty active lifestyle – both physically and mentally with work and play. Therefore the diagnosis really shook me and was quite frankly, devastating. I, like everyone I am sure, don’t want to end up in a wheelchair if it is avoidable.

 

 

My mother has M.S, and went from walking around normally to being completely bedridden in under 10 years. She started to decline when she was around 35; a little younger than me. I am truly terrified of being unable to walk or care for myself and am determined to do everything to give myself the best possible chance of living a normal, happy and active life for as long as I can.

 

 

To top it off, after several weeks in hospital from a very severe flare and a further 5 weeks signed off work to recover from a challenging lumbar puncture leaving me bedridden, I was made redundant from my job of over three years. I lost my income and most importantly, my health insurance.

 

 

As a single person living alone with no local family support, I have to rely on myself. I spent most of my savings contributing to upgrading my mum’s house in 2020 so that it was liveable and appropriate for her disability needs.

 

 

I am a permanent resident in Hong Kong, which means I am entitled to some (almost) free healthcare. However, MS is not prevalent here, and the waiting lists are incredibly long, especially with Covid-19 adding to the problem.

 

 

After requesting an appointment in the public system in November 2020, I received a letter in December 2021 to say the earliest available appointment to see a neurologist is August 2023.

 

 

 

 

What is Multiple Sclerosis?

 

 

MS is an incurable autoimmune disease where your own immune system attacks the protective covering of nerves (myelin) resulting in nerve damage which disrupts communication between the brain and the body; think frayed electricity wires and electric shocks.

 

 

Symptoms are widely varied and why it is often referred to as the ‘snowflake disease’. Just because you know someone with MS, it doesn’t mean our experiences or outlook are the same.

 

 

For me, my M.S means intense, chronic fatigue almost every day, muscle weakness, pain, numbness, pins and needles, the feeling that bugs are crawling on me (dysesthesia), tinnitus, migraines, cognitive issues such as brain fog and memory loss and at its worst, depression.

 

 

 

What have I done so far to help myself?

 

 

I made changes to my diet, adapting to a more anti-inflammatory style and omitting as many foods as is reasonable, as well as supplementing with neurologist advised vitamin and minerals. I adopted intermittent fasting, focussed my exercise on more strength and mobility, and embedded myself in the online autoimmune community to try and find as many sources as possible for advice and hope.

 

 

In August 2021, I went back to the UK (where I am not entitled to free NHS care because I have lived abroad for over 10 years) and paid to see a private neurologist and haematologist to seek the best specialist advice.

 

 

I had an additional MRI scan and the results showed that even since my diagnosis the year before, I had new lesions on my brain, increased brain atrophy (shrinkage) and worryingly, a new lesion on my spine, where I had previously had none. The results appear to show increased decline at a fair speed.

 

 

I have to do something now before it is too late.

 

 

 

 

Well if there’s no cure… what happens next?

 

 

Available medication in Hong Kong is highly limited compared to countries with a higher MS population like the UK, US and Australia. The medication that I was recommended to have by a UK neurologist in October 2021 isn’t available here. The best option from what is available privately will cost a minimum of HKD 18,000 (USD 2,300 / GBP 1,700 / AUD 3,200) every month.

 

 

Perhaps most importantly, MS medications are not targeted to halt the disease. Their aim is to reduce the number of lesions (swelling on the brain), and the frequency and severity of symptoms. They are not aimed at slowing or stopping progression of the disease.

 

 

The ‘best available’ medication available to me here is only up to 48% effective at reducing the severity and frequency of symptoms and lesions.

 

 

The only treatment to date that has proven to have the potential to halt the disease in it tracks is Haematopoietic Stem Cell Transplant, or HSCT.

 

 

80% of people who have this treatment do not have further symptoms or progression of the disease once recovered. This is my lifeline.

 

 

 

HSCT

 

 

HSCT is an intense chemotherapy treatment. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your own stem cells.

 

 

I have been accepted to Clinica Ruiz in Mexico for the treatment and need to pay the full balance at least 3 months beforehand. As a world leading clinic for HSCT, they have conducted over 3,000 transplants, with 80% of their patients recovering from their symptoms with no further progression, and many with reduced symptoms.

 

 

I want to be one of these success stories. I want my old life back.

 

 

For the record, the UK declined my eligibility for private HSCT because I have not been on any other medication, but I cant get on any medication until a minimum of August 2023 when I can see a neurologist in Hong Kong. It might be too late by then. It is also more than double the price of Clinica Ruiz, even if I was accepted. I am not eligible for NHS treatment at all (and they rarely do HSCT on it anyway).

 

 

The best option is to have the treatment as early in my diagnosis as possible, before my disability is beyond fixable.

 

 

HSCT is not the ‘easy option’. It will involve travel to an unfamiliar country, chemotherapy to wipe out my immune system to almost to zero, losing my hair, feeling sick as a dog and being unable to work. The process itself takes one month. Then the recovery starts. Over a period of six months or more, I will rebuild my immune system from scratch. I’ll also need (and pay for) all of my vaccinations from childhood again about a year after the treatment.

 

 

As with all chemo patients, I will be at risk of infection – pretty terrifying in the current corona virus climate. The death rate of HSCT is up to 5%. However, I was advised in the UK and also by Clinica Ruiz in Mexico that mine will be lower, as a fit, non-smoker, under 40 (just!), healthy (minus the MS!) candidate.

 

 

Still… it’s pretty scary stuff… I’ve not taken this decision lightly.

 

 

 

 

What is the money for?

 

 

 

 

 

In addition, I wish to give back to others going through a similar, life changing situation. Therefore I pledge to give:

 

 

 

So, that’s it! Me and my story. Thankyou for taking the time to read through.

 

 

It isn’t all depressing! I have hope and a dark sense of humour; I’ve not checked out yet!

 

 

If you would like to support me you can do so by:

 

 

 

I am so grateful for my network of friends who have been my emotional (and often financial) guidance during this challenging time. I wouldn’t be here without them.

 

 

Thankyou for your help and support, it genuinely means so much

 

Victoria

 

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