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Frances and Ivan have MS... but one carries out research into the condition and the other runs marathons to raise funds

 

Ivan Prue and Frances Evans speak out about their experience with multiple sclerosis to coincide with MS Awareness Week. By Lisa Smyth.

'I'm optimistic about what drugs might be available'

Frances Evans (25) is studying for a PhD at Queen's University Belfast. She was diagnosed with multiple sclerosis at 19 and is now researching treatments for conditions such as it. Originally from Manchester, she now lives in south Belfast.  She says:

I was diagnosed with multiple sclerosis (MS) in 2012 when I was 19. I started to experience symptoms around November 2011. I was getting numbness down one side of my back and around my neck and face, but I ignored it for a while.

Then I started to get a bad headache and I was worried I might have a brain tumour. That pushed me to make an appointment with my GP, which was about May the following year.

I didn't know anything about MS at this stage. I had never met anyone with MS, so I never considered that might be what was happening to me.

I explained to the doctor what was going on and I knew he had written on my notes that he suspected I was experiencing demyelination, so I looked it up afterwards as I didn't know what it meant.

It's basically where the insulating material around the nerves, the myelin, is worn away or damaged, which causes problems in the brain and throughout the body.

The first thing that came up relating to demyelination was MS and I realised it did sound a lot like what I had, although I knew not to diagnose myself but to wait until all the tests had come back.

I was fortunate that my dad had health insurance through work so all that happened quite quickly.

At the time, I was at St Andrew's University in Scotland and I was studying cell biology.

It was difficult to be diagnosed with MS when I was at university, it's quite scary and unpredictable with regards to symptoms that could potentially happen.

I was so young as well. I was only a teenager, so I really wasn't expecting to be told I had anything like MS.

The first few days after I was diagnosed were definitely the hardest, trying to process everything and think about what was happening to me, particularly as there were so many unknowns. I've come to accept it now because there is no point letting it upset me - that isn't going to change anything. But at the start it definitely wasn't pleasant.

You sit down and do some reading about it and you see all the worst case things that can happen and that's frightening, particularly as I was so young at the time so it was hard to be upbeat.

Everyone else at university was healthy and didn't know anything about MS and I didn't want to tell people, although as I have grown up I have come to accept it more.

I have relapsing remitting MS, which is a type that has a lot more treatments, so in terms of the kind of MS you can have, it is probably the best, as sad as that sounds. I'm able to get drugs to delay the progression of the disease.

When you're diagnosed they tell you that you pretty much have to wait and see what will happen. Usually the symptoms of relapsing remitting MS come on very strong for a period of time and then resolve. However, I find there is some residual damage from them.

During a relapse I suffered optic neuritis, which is where the optic nerve becomes inflamed and I lost the vision in my left eye and it's never really come back.

I'm actually still legally blind in that eye, although thankfully my right eye is completely healthy.

The first thing I noticed was an irritation in my eye, which felt like there was something in it. I kept rubbing at it but couldn't feel anything in it, yet over the next day or two my vision started to close up and everything gradually became more grey. It got worse until I lost all the vision in the eye.

They were able to give me a treatment that helped to reduce the pain, as I had a headache around the eye, but it didn't improve the vision.

They can't give you any medication to repair the damage that has already been done so the vision in my left eye will always be affected.

It was so scary when it was happening and I constantly worry that I could have another relapse and lose the vision in the other eye.

I can deal with the numbness, but to lose my sight would be the worst thing that could happen to me.

My last relapse was in November last year where I went numb on the whole right side of my body. It also spread slightly to the left.

When I have a relapse I have to make sure that I rest and sleep a lot and last time around I felt a lot better after the Christmas break.

I try to get on with work as much as possible but you have no idea when the symptoms are going to stop.

When I went to university originally, it was to study psychology but the way the course was, I had to study multiple subjects and I found that I liked biology more. I switched to biology and I really enjoyed the lab work, which is what set me on the path of doing research.

After I graduated from St Andrew's I moved to Edinburgh to do my Masters and it was there that I spent time as a research technician.

Of course, I have a personal interest in MS which is why I opted to do my PhD at Queen's University and work with Dr Denise Fitzgerald.

The project I am working on during my three-year PhD hopes to identify and test new therapeutic targets that can promote brain repair in diseases where myelin is damaged, such as MS.

It's really exciting for me when something works, although working in research gives me perspective of how long it takes for a treatment to become available to patients.

At the same time, I know that the treatments for MS have really improved over the last five or 10 years and that is down to research. It makes me very optimistic about the future and what drugs might be available for me.

I'm on a strong drug at the moment and hopefully it will slow down the progression long enough that by the time I have another relapse there will be much better drugs available.

I think it is an exciting time for research and that's something to be positive about.

'I deeply believe that fitness has helped me physically and mentally'

Ivan Prue (46) lives in Bangor with Fiona, his wife of four years. He was diagnosed with MS in 2009 when he was 38. He says:

I was actually misdiagnosed way back in 2005. I was getting pins and needles in my feet and legs, so I went along to the GP who referred me to the Royal.

They did some tests and told me it was a very mild case of Guillain Barre syndrome and that I shouldn't come back.

While I was in hospital having the tests done, they put me on the scales and I was 21 and a half stone. I remember thinking to myself that I was going to have to do something about that.

I would never have been that big into doing sport, I was more into sitting watching the rugby than doing exercise, but when I saw what weight I was I decided to do something about it.

I wanted to get a little fit so I started out limping between lamp posts and gradually ended up getting extremely fit and running marathons.

Over the years, however, little things were happening to me, like ringing in my ears, dizziness, vertigo and numbness.

It was a build-up of little things and at the time I had no idea what it was. I got used to the pins and needles and other issues, but looking back now with my diagnosis, it all makes sense.

I was getting on with life and then one evening I was out on a cycle and I was about three miles down the road when I got really dizzy and fell off the bike.

I went down to A&E to get checked out. I thought I would be in and out of hospital, but then they took me to the Royal and started doing all these tests, including an MRI and a lumbar puncture. Afterwards, they diagnosed me with multiple sclerosis (MS).

It's hard to really talk about that time because I am moving forward and I have really blocked a lot of it out, but they were dark days.

I didn't really have a clue about MS when I was diagnosed even though I had an aunt who had it, but that was almost worse because she had a more aggressive form and basically went straight into a wheelchair.

That was my mindset at the time, I assumed the worst, but then I was told I had relapsing remitting MS and I might not have another relapse for another 10 years.

At the time, I decided not to tell anyone, not even my mum, I just wanted to get on with life and I didn't want anyone worrying unnecessarily.

I spent my time in hospital walking around the wards and corridors - I just wanted to keep moving and I was able to get out and take part in the Rathlin Run, a 10-mile road race, and then I did the Dublin Marathon in three hours and 16 minutes.

I told myself I was fine and would be able to keep on top of things.

I kept on going to work but the stress of that was exacerbating things. I was a facilities manager and I was in a health and safety meeting just before Christmas in 2009 when a colleague asked me if I was okay.

The next thing, I was being whisked off to hospital because they thought I was having a stroke. Of course it wasn't that, it was my MS.

I spent Christmas and New Year in hospital and I had to tell my family what was going on.

My left side was completely paralysed, I couldn't move my arms or hands and they had to teach me how to walk again. I started to see a specialist neurologist and he wanted to start me on a new treatment.

However, by taking the drug, there is a risk of a brain disorder, a rare and usually fatal viral disease, so we had to discuss whether the benefits of the drug outweighed the risks of taking the drug, and in the end I decided to take it and I haven't been off it since.

I'm monitored very closely and have an MRI every two months.

When I am lying in the MRI scanner, listening to the noise of it, there are times when I wish I was off the drug, but then I don't want to go back to where I was.

There are a lot of different types of MS and my treatment is about managing my MS. I'm always keen to say 'my MS' because everyone's experience is different, the way they are affected, the way the condition progresses and how treatments work.

I would never say that because I am able to do something that someone else with MS should be able to do that too. I'm so lucky that I am still able to run, in fact, ironically I have only ever run marathons while I've had MS.

I deeply believe that fitness has helped me and I don't just mean physically, it's helped me mentally as well. I know there are some people who overhaul their diet and really believe in that to manage their symptoms, but an extreme diet isn't for me.

I believe that life is for living and everything in moderation works for me.

One part of having MS that I found very difficult was the fact that I had to take medical retirement at 42 because I'd always been a workaholic, but it turns out it was the best thing I've ever done.

I'm able to volunteer for the MS Society and I helped to set up Run for Research, which is all about raising funds and awareness.

When I was first diagnosed, I drove to the MS Society Centre in Belfast, but I turned around and drove out again as I didn't want to accept what I was facing, so I know we need to reach people in other ways.

I also know how important research is for people with MS because when you look back 10 years, the treatments now are much better and that is all down to research.

MS is awful, but you have to think positive. I have met so many people because of my MS that I would never have met otherwise and I also feel lucky that my symptoms are largely under control."

Charity aiming to raise vital funds

Multiple sclerosis (MS) is an unpredictable and incurable condition that affects the brain and spinal cord.

It is often painful and exhausting and can cause problems with how a person walks, moves, sees, thinks and feels.

More than 4,500 people in Northern Ireland have MS and most are diagnosed in their 40s and 50s.

It affects almost three times as many women as men.

The MS Society has launched its Kiss Goodbye to MS campaign, which is asking people to ditch their favourite vice - whether that is chocolate or wine - while helping the charity raise vital funds for research.

Meanwhile, Run for Research is a running event featuring 10km, half marathon and 20-mile distances, as well as a family fun run. It will take place on October 7 at Holywood Exchange.

To register interest in Run for Research, email nireception@mssociety.org.uk

For more information on the MS Society or the Kiss Goodbye to MS campaign, log on to www.mssociety.org.uk.

The charity also runs a helpline offering emotional support and information, tel: 0808 800 8000.

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