The World vs.MS Blog

The World vs.MS is about people. It’s about anyone living with multiple sclerosis (MS) or anyone inspired to join the fight against it.

Here are their stories and the latest updates from us.

My passion for jewelry making

Icerlene Wiley

Blogs

08.08.17

About 10 years ago, I realised that I had to shift my passion for sewing to jewelry-making. My realisation came because I was rapidly losing my mobility 15 years after being diagnosed with Multiple Sclerosis. As hard as I was fighting to remain mobile, I was quickly losing the battle. The painful feelings were deep,…

View more

My fight song!

Seelie Kay

Blogs

27.07.17

Dear family and friends, MS is one of those diseases that scares friends, family, and employers. It is a fickle disease and a cruel one. It can disappear for years, and then in a single day, take out your legs. Its similarities lie in its cause (damage to the myelin coating around the nerve fibres…

View more

I can’t believe you wrote a dirty book!

Seelie Kay

Blogs

27.07.17

I am a former lawyer and a part-time journalist. I have more than 30 years of experience combining my legal and writing skills, working for law firms, bar associations, legal publications, and yes, even for courts. And while I know the backrooms better than the corner offices, it has been a good living. Writing a…

View more

The moment Shana decided to Demand More from life with MS

TWvsMS | Shana Pezaro

Videos

24.07.17

At one point, Shana’s bladder ruled her life. In this short interview with us, she talks about the moment when all of that changed – the moment she decided to Demand More from her life with MS.

My MS Journey

Anja Hebel

Blogs

19.07.17

It was Pentecost Sunday 2012 when the tips of my thumb and index finger went numb shortly after I finished my shower. I remember that day very well as I flew from my home in Amsterdam to London for the long weekend to visit friends and it was the weirdest day ever as I didn’t…

View more

The moment Patrick decided to Demand More from life with MS

The World vs.MS

Blogs

18.07.17

Being advised to take medical retirement came as a shock to Patrick. But here he says ‘thank you’ to that moment for making him Demand More from his life with MS.

Jodie on making BladdeRunner a reality

The World vs.MS

BladdeRunner's Story

10.07.17

Jodie Hughes is an enabler at Entrepreneurial Spark – the business-accelerator helping the BladdeRunner inventors to create the app. Here, she talks a little about her role in the process and what she is doing to help the team reach their goals.

BladdeRunner inventor Patrícia talks about the app

The World vs.MS

BladdeRunner's Story

10.07.17

When Patricia joined a team entering The World vs.MS HackAMSterdam, she didn’t know what to expect. She certainly did not expect to create the winning idea. Here, she talks to us about her journey so far.

BladdeRunner inventor João talks about his MS

The World vs.MS

BladdeRunner's Story

10.07.17

João Medeiros has lived with MS since 2012. In this interview, he talks about how his own first-hand experiences helped him win The World vs.MS last year with the app, BladdeRunner.

BladdeRunner inventor Catarina on developing the app

The World vs.MS

BladdeRunner's Story

07.07.17

Catarina Farinha, winner of The World vs.MS Round 1, talks about her vision, values, and hopes for the development of MS app BladdeRunner.

Ana on her pride and hopes for BladdeRunner

The World vs.MS

BladdeRunner's Story

07.07.17

Ana Garcia-Cebrian from Sanofi Genzyme, Portugal, talks about BladdeRunner and the pride she has for the idea that originated in her home country.

The burdens of brain atrophy

The World vs.MS

Education

03.07.17

In our previous article, understanding the brain in MS: introducing brain atrophy, we talked about brain atrophy – the loss of brain tissue and how it happens a little faster with MS. But let’s take a closer look at how brain atrophy impacts and disrupts the daily lives of people living with MS. Brain atrophy…

View more

Brain atrophy in Multiple Sclerosis

Patrick Burke

Education

16.06.17

There are lots of things about MS that are bad news. Just think of things like falling over or an urgent need to go to the loo. These are nothing in comparison to MS when nerves in the brain get damaged. Once those little nerves in the brain have been damaged enough, unfortunately that’s it…

View more

Making choices, pursuing challenges, living my life.

Michiel Prins

Blogs

16.06.17

The days were extremely sunny in May that year. My girlfriend and I were walking through the city center, and at a certain moment I asked her, ‘do you see my legs are drifting?’. She answered, ‘No, what are you talking about?’. I said that I felt something was different. She just couldn’t acknowledge anything…

View more

Understanding the brain in MS: Introducing brain atrophy

The World vs.MS

Education

07.06.17

Let’s talk brain matters When we talk about MS, we often talk about things like lesions and relapses, but you might have also heard about something called brain atrophy. Brain atrophy is being talked about more and more these days, especially by some MS experts, so what exactly is it? And why are we talking…

View more

Remembering

Barbara Stensland

Blogs

05.06.17

I was having a lovely afternoon the other day; work had gone brilliantly, the sun was shining and I was attempting a new recipe – lamb with sumac and red onions. I hummed along to the radio, relishing the thought of settling down on the sofa later to catch up with Netflix. I rummaged through…

View more

The many changing emotions of MS

The World vs.MS

Blogs

31.05.17

I'm working in collaboration with an amazing team of people called "The World vs MS" and what attracted me to this was plain and simple – the title! My name is Hannah and I'm 26 (soon to be 27 years old) and I have multiple sclerosis. I was diagnosed at the age of 24 and…

View more

What happens when patients decide to be innovative?

Catarina Farinha

BladdeRunner's Story

30.05.17

The unpredictability that comes with living with MS can be nerve-wrecking. It can affect every aspect of your life and make you feel like you have no control over it. Suddenly, you start struggling with everyday tasks in a way you didn’t think was possible, and you have to adapt the way you cope with…

View more

MS says no!

The World vs.MS

Blogs

30.05.17

I used to love nothing better than spending rare evenings out with my partner or close friends; the excitement of choosing a new top, applying a slick of eyeliner, slipping on a pair of my loveliest Italian boots, fuelled by the thought of an enjoyable couple of hours away from my normal routine as a…

View more

It’s good to have a dog when you suffer from MS

Joao Medeiros

Blogs

23.05.17

You get to the age of 39 and suddenly you fall down! You get the rug! Stunned by the fall you take some time to realise what happened! The roar of impact stuns your judgment, you´re confused. How did you fall? In the distance you hear someone trying to help you. You know the sound…

View more

The Positive About MS story: Where, When & How?

Kaz Laljee

Blogs

05.05.17

It was January 2007 and my diagnosis of Primary Progressive Multiple Sclerosis (PPMS) was official. It was rubber-stamped with a letter I received from my consultant. I was actually relieved, as there were so many things going wrong with my body and there was no explanation for it. So, to be finally given a name…

View more

MS and Sport: My journey from diagnosis to becoming a Paralympic rower

The World vs.MS

Blogs

22.03.17

At the end of 2014, a crazy idea popped into my head: I should run a marathon. And not just any marathon, but the toughest marathon in the Netherlands: the Iron Viking Run. Forty-two kilometres through the mud, with added obstacles! My training programme was in full swing: I was running 90 kilometres every week,…

View more

Cooking, whilst living with MS

The World vs.MS

Blogs

15.03.17

MS forces you to adapt to the way you carry out everyday tasks. Things that able-bodied people take for granted. One of these is cooking. It’s all too easy to buy ready-made meals because the prospect of cooking can be so daunting. As you may know, life with MS is a struggle 24/7. But there…

View more

Multiple sclerosis: writing to beat the disease

The World vs.MS

Blogs

08.03.17

At the time of diagnosis a chronic illness is a tsunami and a long-term challenge thereafter. Having a love of the arts or sport can make acceptance easier. For me, putting my woes into words has always helped me. As a teenager, I always loved writing: writing enabled me to distance myself from my feelings,…

View more

HackAMSterdam: overcoming the challenges of MS

The World vs.MS

Videos

03.03.17

Paula discusses her experiences with MS, motherhood, work and much more!

Disability discrimination

Barbara Stensland

Blogs

02.03.17

When you are going through a nightmarish MS diagnostic process, work becomes a safe haven, a refuge. It provides badly-needed routine and a sense of continued identity in an uncertain world of lumbar punctures, blood tests and inconclusive appointments with medical consultants. As your world collapses, one thing is certain; you can still do your…

View more

MS and sleep: not always the best of friends

Patrick Burke

Blogs

21.02.17

There are lots of things I don’t like about MS. Here are just a few of them: I walk with a wobble and it’s getting worse When I drink wine or strong black coffee, I will need a wee within half an hour Running for the bus? Gave that up years ago It’s given me…

View more

My role as a caregiver

Floris Tenholter

Blogs

14.02.17

Since a few weeks ago, I‘ve been writing for a Dutch blog called Mantelzorgelijk.nl. They asked me if I’d like to share my experiences (which I am writing on my personal blog) and the first thing that came to my mind; am I a caregiver? For me the term caregiver is just a name –…

View more

Selfie book

The World vs.MS

Blogs

08.02.17

Multiple Sclerosis pops up in the plot of a novel I am reading or a drama I am watching every now and then. Usually, a normally law-abiding citizen is driven to crime to pay for their wife’s exorbitantly expensive drug. Other times, a new relationship comes into difficulties because a previous partner had MS. I’m…

View more

Take a look at our story so far…

TWvsMS

BladdeRunner's Story

08.02.17

View more

Whittling 40 ideas down to three: the mighty task

The World vs.MS

Videos

03.02.17

Listen to what they’ve got to say about the mighty task.

The wait is nearly over…

The World vs.MS

Videos

03.02.17

Our Judging Panel have shortlisted the three final ideas to go to public vote. Watch out for their announcement!

HackAMSterdam: a word from our judges and collaborators

The World vs.MS

Videos

03.02.17

The World vs.MS judges and collaborators share their experiences of being a part of the initiative.

HacksAMSterdam: catching up with our Steering Committee

The World vs.MS

Videos

03.02.17

Our Steering Committee share their experiences of being part of The World vs.MS

HackAMSterdam: chatting with the weekend’s brainy Hackers

The World vs.MS

Videos

03.02.17

The brainy Hackers at HackAMSterdam tell us about their experience of the weekend.

HackAMSterdam: overcoming the challenges of MS

The World vs.MS

Videos

03.02.17

Fernando discusses his experiences with MS.

HackAMSterdam

The World vs.MS

Videos

03.02.17

The World vs.MS team shares the highlights from HackAMSterdam!

Why I find blogging important

The World vs.MS

Blogs

16.01.17

Floris Tenholter is a 36-year-old IT worker living in the Netherlands with his wife who has MS. He is also the founder of Platform MS, a site where people in the MS community can share their personal stories. This is his story of how he started his blogging site. A few weeks after I started…

View more

Living healthy with MS

Paula Sanchez

Blogs

09.01.17

The key to health and happiness is to understand and accept who you are. MS has taught me so much about my body and mind but it didn’t happen in an instant. It was a case of trial and error over the first year or so living with MS to really understand what was working…

View more

HackAMSterdam: designed to create solutions

The World vs.MS

Blogs

04.01.17

Since becoming involved in the MS community, following my own diagnosis 8 years ago, I’ve had the chance to experience lots of things. HackAMSterdam was definitely up there as the most novel and unique event I’ve been asked to attend! Held over 19th-20th November 2016, the event was designed to create solutions to the three…

View more

What do I want this Christmas?

The World vs.MS

Blogs

22.12.16

I’m Patrick Burke and have suffered from multiple sclerosis (MS) for far too many years. I am convinced it all started in 1972 when I was 18. I ignored a serious relapse in 1979 when my bladder emptied itself twice but the problem seemed to go away. I was diagnosed with MS in 1994 I…

View more

HackAMSterdam: the brainwave that drives innovation

Barbara A. Stensland

Blogs

22.12.16

What do you get when you bring together: 90 participants 36 hours 9 hacker teams 8 expert companies 5 countries? One winning, life-changing idea. Earlier this year, I was thrilled to be asked to take part in a new initiative – The World vs.MS. The idea was refreshingly simple; ask the MS community to invite…

View more

From 40 ideas down to three

TWvsMS

Videos

22.12.16

The ideas submission phase has been wonderful. Much more wonderful than we could have possibly imagined when we first presented the three challenges to European innovators, creatives, and the everyday people wanting to make a difference. As soon as the three briefs were revealed on our website, we waited anxiously for the first idea to…

View more

Unexpectedly expecting

TWvsMS

Blogs

09.12.16

When you think of family planning you think of the usual. Can we afford it? Is now the right time? Do we name them after an exotic fruit or not? But for Celia, diagnosed with relapsing-remitting MS three years ago, there was even more to consider. We sat down with her to talk about her…

View more

The World vs.MS needs you

The World vs.MS

Videos

31.10.16

Now the ideas phase of The World vs.MS has launched, there’s just one vital thing we need. You. Whether you’re a teacher, designer, stay-at-home parent, student or entrepreneur, we want you to take on our challenge briefs and tell us your ideas to solve them. The World vs.MS is all about brains helping brains, and…

View more

Living positively with MS

The World vs.MS

Blogs

07.10.16

Every year in May I commemorate my “MS’versary” – the day that I was diagnosed; a day that changed my life in ways I could never have imagined. FROM NEGATIVE TO POSITIVE Receiving an MS diagnosis is hard. I was scared, worried about the future. However, I didn’t want to feel like that forever. More…

View more

Donate your brain this November

The World vs.MS

Blogs

06.10.16

Study a map of central Amsterdam closely enough and, from the right angle, you’ll notice something. The city’s outline and vast canal network with its many intersections and crossing points begins to resemble the folds and grooves of the human brain. The canals are the lifeblood of the city, connecting people and places and without…

View more

The disabled coffee

The World vs.MS

Blogs

31.08.16

Standard Coffee Most people are able to buy a standard cup of coffee in a local coffee shop or café for between £1-2. Highstreet Coffee You can also buy a similar coffee from any high street café, restaurant or coffee shop. You can usually take your pick from a variety of styles – cappuccino, latte,…

View more

Never give up hope: the powerful and determined voices of MS patients

The World vs.MS

Blogs

24.08.16

Nadine Van Dongen recounts her experience working with MS patients as founder of the patient research company PIPHealth. For many, opening up and talking to strangers doesn’t come easy, but when it’s something as personal as your own health it evokes many emotions. Through my role at Patient Intelligence Panel (www.piphealth.com), I encounter many different…

View more

Challenges accepted

The World vs.MS

Videos

23.08.16

It’s 22nd June 2016. Ireland’s football team face arguably their toughest ever challenge in opponents Italy, but it’s not just Ireland fans who are feeling the pressure… The same day, our Judging Panel arrive in Dublin, each member aware of the task at hand. Whilst the boys in green are going head-to-head with the Italians…

View more

Meet Charlotte

The World vs.MS

Videos

13.06.16

“Make the most of the good times” Charlotte, a medical journalist living in Paris, explains how her life has changed since her MS diagnosis 19 years ago. From making time for family and friends to telling first dates about her condition, she shares her experiences of balancing a busy social life with her multiple sclerosis….

View more

MS requires a great deal of organisation

The World vs.MS

Blogs

03.06.16

Having a thriving social life with MS requires a great deal of organisation, at least that’s the case for me, given that I suffer from exhaustion and pain. Over years of lost experiences and all too frequent cancellations, I’ve developed a few tricks that allow me to see my friends without paying for it too…

View more

Listen to your body

The World vs.MS

Blogs

02.06.16

So often I'm told; "You look really well! How are you managing MS so well on top of everything else going on in your life!?" All I think to myself is… where do I start! Nutrition? Sleep? Exercise? Mental approach? Lifestyle choices? When I was diagnosed with MS I made a conscious decision to evaluate…

View more

Anger made me make some changes

Joan Jordan

Blogs

02.06.16

Every few months, I get an “angry at my MS” day. They happen much less than they used to but they are the days when the philosophical clichés I see on social media just don’t help. Days when I just want to pulverise the lemons life has given me. I have found that it’s better…

View more

Top tips to live with MS

The World vs.MS

Blogs

26.05.16

When you are diagnosed with MS… you slowly begin to realise that this is not for the short term and something that we are going to have to deal with and accept for the foreseeable future.  However, I was determined for this not to be the case… I wanted to show them (medical professionals) and…

View more

Fatherhood and multiple sclerosis

The World vs.MS

Videos

19.05.16

Kaz shares his experiences of being a father living with MS.

My achievements

The World vs.MS

Videos

19.05.16

Kaz shares his greatest achievements

My multiple sclerosis story

The World vs.MS

Videos

19.05.16

Daily life with multiple sclerosis

The World vs.MS

Videos

19.05.16

Paula describes how the invisible symptoms of multiple sclerosis impact her day-to-day.

Managing my multiple sclerosis

The World vs.MS

Videos

19.05.16

Paula shares her top tips on diet, exercise and sleep.

Achievements & advice

The World vs.MS

Videos

19.05.16

Paula discusses what she has learnt about herself since her multiple sclerosis diagnosis.

Meet Paula

The World vs.MS

Videos

16.05.16

“MS is my opportunity to be legendary” Paula is a visual merchandiser from London who has been living with multiple sclerosis for three years. From temporarily losing her eye sight to building art installations, Paula gives us an intimate insight into her life with MS. Paula: My story Paula talks diagnosis and how her blog,…

View more

Meet Kaz

The World vs.MS

Videos

09.05.16

“I’ve focussed on the positive and reinvented myself” A digital marketing expert, Kaz tells his story of life with MS since his diagnosis 9 years ago. From increasing disability to gaining the BBC as a client, Kaz talks about all aspects of life with MS and how a positive attitude goes a long way. Kaz:…

View more

The tight squeeze of acceptance

Claire Mitchell

Blogs

29.04.16

“You’re not seriously thinking of squeezing me into that?” I asked my daughter in panic during a recent wheelchair trip around the shops, right before my kneecaps met the back wall of one of the tiniest lifts I’ve ever seen. I’m sure the shop owners ticked all the boxes on their planning application regarding disabled…

View more

Meet Claire

The World vs.MS

Videos

29.04.16

“It’s about the small victories” A writer, a traveller and a graphic designer, Claire shares her experiences of living with multiple sclerosis since her diagnosis eight years ago. From walking sticks and wheelchairs to giving her limbs characters, Claire describes how she manages life with MS whilst raising her two children. Claire: My story Claire…

View more

The World vs.MS is here!

The World vs.MS

Blogs

15.03.16

Every day, millions of people live with multiple sclerosis (MS). With unpredictable symptoms, simple day-to-day tasks can be a real struggle – everything the everyday shouldn’t be. That’s where The World vs.MS (TWvsMS) comes in.

View more

The World vs.MS is a Sanofi Genzyme Europe initiative.
©2017 Genzyme Europe B.V. - All rights reserved.
The World vs.MS and Sanofi Genzyme are registered trademarks.
Last updated: 02/06/2017
GZEMEA.MS.17.0023

You are about to leave

www.TheWorldvsMS.com

You are about to leave www.TheWorldvsMS.com. Sanofi Genzyme is not responsible for the content of this external website.

You are about to leave

www.TheWorldvsMS.com

You are leaving to visit another one of our group websites. This website may be governed by different terms and conditions.