‘I’ve waited nearly 20 years for treatment that will help my MS
Joceline Colvert first realised something was wrong when she was in her early 20s.
“Two really odd things happened: first, I just woke up one morning and got a rushing, fizzing sensation all the way down my neck and spine and slightly into my legs when I looked down,” she told i.
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“It wasn’t painful, just very strange. The other symptom was to do with my vision. I’d enjoyed 2020 vision all my life up until that point but it seemed to be worsening in one of my eyes – an absolute classic first symptom of MS.”
Visits to the GP and neuorologist followed but it was only a year later when she was finally diagnosed with relapsing remitting multiple sclerosis (rrMS). Over 100,000 people in the UK have MS of which around 80 per cent will have the relapsing remitting type.
“Now I realise they didn’t want to slap a diagnose on me that will never go away. It’s a permanent diagnosis and I was quite young, only 22. I was quite shocked – the only other person I had heard of who had MS was a friend of my parents when I was a child, who obviously seemed really old to me as she was in a wheelchair. When I got my diagnosis I thought that would never happen to me. Now I’m 41 and in a wheelchair.”
Although she’s able to work full-time as a support engineer for a software company in Brighton, Joceline’s disability meant she had to leave her old frontline clinical role as a healthcare assistant at Brighton and Sussex University Hospitals NHS Trust.
“It has been a really slow progression for me. For the first 8 years I just kept telling myself I wasn’t even sure it is MS. I had nothing to do with the NHS, just acupuncture, and then had relapses. Once one of my eyes went completely blind – I call it ‘white blind’ because I could see light but it was just like a thick fog, couldn’t see anything. I had horrible, extreme relapses which were relatively short-lived – completely body numbness, my hands became unusable and I couldn’t hold a cup of coffee. It was really distressing. The acupuncture worked in the early stages and I chose that because no one really knew how to treat me and I wanted to go my own way.”
However, further health problems emerged such as extreme vertigo, double vision, nausea, leading Joceline to symptomatically treat each one and wait for whatever was wrong to go away. A combination of all those illnesses attacked at the same time at the start of this year.
“It’s fair to say I was in semi-denial and part of my ability to cope with the MS was just to block it out and get on with my life, deal with the relapses when they happened and pretend they might be something else. It took quite a long time for me to wave the white flag and come back to the NHS.”
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Joceline, from Haywards Heath, discovered a potential new treatment for her condition while watching a BBC Panorama documentary in 2016 called “Can you stop my multiple sclerosis?”. It featured initial trials of Haematopoietic Stem Cell Transplantation (HSCT) in the UK which helped some MS sufferers with paralysis to regain their movement. The crossover cancer treatment is an intense chemotherapy treatment for MS and aims to stop the damage MS causes by wiping out and then regrowing the immune system, using stem cells.
It is the first treatment she has ever got excited about and believes could be truly life-changing. The success rate for rrMS is 80-90 per cent which Joceline says is “phenomenal” compared to the limited available drug treatments, which only aim to slow down disability
“I saw the programme and felt I could definitely do that. It didn’t scare me at all. One guy on the programme had come in stumbling and by the end he was riding a bicycle in his garden. When HSCT is available on the NHS – as it wasn’t at the time – I’d put myself forward for it.”
Unfortunately for Joceline, she only became aware it was available on the health service around 18 months ago, by which time she was no longer eligible for HSCT. The expense of the treatment and the increased pressures on the public purse mean the NHS will only treat patients who have been diagnosed for less than 15 years. She has been diagnosed for 18 years.
“I had to try various other treatments – and fail them – before my doctor would be able to refer me for HSCT, but by then it was too late.”
Joceline’s attention then turned to Russia, which has been offering HSCT for over 10 years, and approached the National Pirogov Medical Centre in Moscow, which looked at her case and accepted her immediately. She is crowdfunding the £40,000 cost to stay there for a month and have the treatment and has reached almost £30,000 so far. The cost in the UK would be £80,000, but Joceline would still be excluded because she still has to meet NHS criteria to pay for private treatment here.
“I’m utterly overwhelmed by the response. I’ve never fundraised for anything in my life until now. The support has been incredible. I’d need two years of follow up with a haematologist in London, to check everything is ok. If all goes well it will put my MS into remission and wouldn’t have to have any treatment for it again. It all goes quiet.”
Anyone interested in supporting Joceline can do so via gofund.me/603e008e