To mark World MS Day 2013, Multiple Sclerosis Spain (EME) and Genzyme have launched a new mobile game called EM Fighter (MS Fighter) to raise awareness and have a little fun along the way! Players must help Neuri the Neuron fight MS and collect objects to gain points. The challenge is to hit 2,500,000 points by World MS Day. More information available on the EME website.

Download link for iOS: https://itunes.apple.com/us/app/emfighter/id645859874?l=es&ls=1&mt=8

Download link for Android: https://play.google.com/store/apps/details?id=com.lafactoria.emfighter

The Honduran MS Foundation will be marking World MS Day 2013 with two events. On 25 May, local artists and members will get together for an afternoon of art at the City Mall. On World MS Day itself, an awareness raising event will be held at San Pedro Sula Central Park. Visit the Foundation’s Facebook page for more information.

Finnish MS Society is organising a festival in Helsinki for World MS Day. Singer Saija Varjus will perform at the event which will be hosted by MP Jani Toivola. Other activities will include an acrobatics performance and a solidarity chain in the form of ‘MS’.

One woman’s experience of how her relationship with her husband changed after a diagnosis of MS

A lovely young woman with MS who wishes to remain anonymous wrote this amazing post for the World MS Day blog. We applaud her bravery in telling us her story and wish her all the best!

Written by a very special anonymous contributor

This blog is entering slightly scary new territory for me… In the past, I’ve been afraid to write about my experience of being diagnosed with MS and the subsequent breakdown of my marriage. I do know that my situation was very extreme, and in hindsight it’s clear how my diagnosis was the catalyst for my relationship to spiral into a nightmare of physical, emotional and sexual abuse. But I have come to understand, sadly, that aspects of what I went through are more common than I ever imagined. I don’t want other people to live through what I experienced believing that it is normal, justifiable or understandable. It’s not. So I’ve decided to talk about it… However, I promise my story is more positive than it may initially sound!

It’s taken me a few years to readjust and many months of intense counselling, but I have come through the whole experience a stronger, sexier and more confident woman. And I’m now dating some incredibly hot, lovely men!

I was finally diagnosed with MS five years ago, aged 28. At the point of diagnosis I was already using a wheelchair, I’d had to sell my dance school and I was in the middle of a massive relapse. I was very ill. My ex-husband just couldn’t deal with my diagnosis. He hated illness and disability and the impact it had on our lives. He was incredibly angry with me for being ill and he refused to get counselling to help him come to terms with it. He became alcoholic and started taking a lot of drugs. He had suffered with depression all his life, and he attempted suicide twice in the 10 months between my diagnosis and when we split up.

He would often get drunk and shout at me about how impossible it was to find me sexually attractive because I was physically disabled. He said that using  catheters to urinate was utterly disgusting. He never wanted to have sex with me when he was sober, but he started using sex when drunk as a way to violently beat me up – which he excused as being ‘kinky sex’. And I let it happen because I so desperately wanted him to want to have sex with me, even if it was violent. Sometimes my body just wouldn’t do what he was trying to force me to do, and then he would storm off mid-sex and shout at me. But the following morning he always claimed he didn’t remember anything.

He blamed me for not being as drunk as him, for being self-righteous and for remembering what had happened. He said I wasn’t any fun anymore, and that MS had changed me. He said it was my fault our sex life and relationship was deteriorating. Then he would get drunk again and threaten to cut himself because he was, ‘such a bad person’. So I eventually stopped telling him what he had said and done to me, scared that I would push him to self-harm or kill himself. I thought it was my fault.

Ten months after diagnosis I gave my ex-husband an ultimatum; get professional help, or leave. He left and we got divorced. To my utter confusion, men immediately started asking me out. I didn’t understand it, I’d had months and months of the man I’d loved telling me I was physically repulsive. I eventually went on a couple of dates, but I completely freaked out every time a man went to kiss me or touch me… I realised I needed proper professional help to come to terms with what had happened to me and I took myself off for six months of intensive counselling.

Counselling drew to an end just after my 32^nd birthday. And that’s when I met the most incredibly beautiful Ghanaian acrobat who was travelling around the world with a circus…  He didn’t care that I used a mobility scooter, he didn’t care that my legs didn’t work properly, he didn’t care that I have PAs (carers) to help me live my life, he didn’t care that I have to sleep in the afternoons, he didn’t care that I had to self-catheterise, he didn’t care that I had MS, he just made it totally apparent that he really, REALLY fancied me and wanted to have sex with me. And so we went to bed and somehow it didn’t matter that my legs didn’t work properly, he made me feel like I was the sexiest woman in the world and it was amazing!

When I split up with my ex, I thought that maybe, one day, I might meet one special man who could see past the disability and illness to see the ‘real me inside’. To my complete surprise, I have discovered there’s a lot of incredibly attractive, lovely men who simply don’t care that I am disabled and take my illness in their stride. I have amazing men in my life who I describe as, ‘close friends and lovers’. I am starting to believe that my illness is not what defines me. They all say that my personality, my sense of humour, my love of life, my body, my hobbies, my smile, my desire for sexual adventure and my quest to have as much fun as possible, all totally over-ride the fact that I have MS.

Yet recently a lover gently pointed out that I have, ‘a hard protective shell which is very tough to crack’. He totally understands why, I’m very open and honest about my past. But I think the most damaging thing my ex-husband ever said to me about living with MS was, “No one knows what it’s really like. If they knew what it was really like, they’d understand why I can’t cope”. So the barriers went up.

I’ve felt, understandably, like I’ve had to protect myself from getting close to anyone because I’d be rejected when they find out the reality of my life. But I have to change. And I think I’m slowly getting there… I’m allowing men to see what my life is ‘really like’ through long term friendships. And whilst they acknowledge that of course my life is difficult, they say I’m definitely worth it.

So now I need to soften up and let men in, even if that means I may get hurt… It’s scary, but that’s just life. And I want to live my life, not hide away regretting what could have been if I’d been braver… So onwards and upwards. Let’s see what the next chapter brings!

Contributed by Amy and Joy Stephens, South Africa

The Making Strides 4 Multiple Sclerosis (MS4MS) fun run was held on Saturday the 11th of May at the Rondebosch Common in Cape Town. The event entailed a 5km walk and a 10km fun run in aid of the Multiple Sclerosis Society of South Africa. The main goals of the event were to raise money in aid of furthering research into MS as well as for the care of MS sufferers who cannot afford items such as wheelchairs, physical or emotional therapy. Overall we wanted to raise awareness and create a day of positivity for those with MS.

My sister Joy Stevens and I began to envision this event in September of 2012. With both of us having a passion for running we wanted to combine this with our passion for doing something for MS. The idea began to form as we were incredibly frustrated by the lack of awareness, knowledge and misunderstanding that existed around MS. This was an idea incredibly close to our heart as our mother was diagnosed with MS 12 years ago, in 2000. Despite this, we have never seen her give up. She maintains positive and determined to fight every single day to stay in control of her body and not let MS stop her from reaching her goals. She is an inspiration to the entire family and we wanted to do something to honour her and show her how much we love and appreciate her.

It was a 9 month journey which entailed applying for an event permit to host the event at the Rondebosch common and organising for everything that we needed to be either sponsored or donated. It was a huge learning curve as both of us have full time jobs and had never organised an event before. Despite this, we were overwhelmed by the responses that we got, everyone we spoke to was incredibly generous, positive and supportive and more than happy and willing to help.


We raised money through a number of ways. Our main source was from event entries and then through donations from the kindness of people’s hearts as well as generous corporates, our Runner Sponsorship plan, where we encouraged runners/walkers to find sponsors for each km they completed and finally through cake sales at offices.

Despite the cold weather we had a great turn out on the day of about 150 people, many of whom wore orange to show their support for MS. Registration started at 7:00am and we kicked off the race at about 8:10 am with everyone in high spirits. Our mother, Jean Stevens and father, Clive Stevens drove down especially for the event from Greyton and were there at the start line to encourage and cheer the runners on. The vibe on the day was incredible and everyone made a special effort to seek us out and share their stories. Everyone was excited and happy to be there.

Runners and Walkers were welcomed at the end of the race with plenty of refreshments, t-shirts, goodie bags and there were great spot prizes for a few lucky winners. Luckily, even the weather managed to hold right until the end of the race.

We managed to raise around R15 000 and succeeded in raising awareness for MS and creating a day of fun and positivity. Most importantly, we honoured our mother in the most amazing way and showed her how important and inspirational she is to us and those who meet her.

We are planning to make this an annual event, with next year’s MS4MS event promising to be even bigger and better. Participants were so supportive and were already excited for next year’s event and promising to bring more people to show their support for MS.

We are overwhelmed by everyone’s generosity and the amazing support of our sponsors. However, none of this would be possible without the endless love and support we received from family and friends as well as the incredible volunteers who pledged their time on Race Day to make it the huge success it was.

We are excited and cannot wait till next year’s MS4MS Race and all the great things we can do for MS.

Amy and Joy Stephens

MS care hosted a stand at Cairo’s first ever marathon last week. The stand was attended by volunteers from the organisation and carried lots of information about MS and World MS Day. To find out more about MS Care visit their website.

Being diagnosed with MS at 18 had a big impact on Breea’s social life, but she managed to see things in a positive light and get on with her life.

“Many people think that because I do have mobility issues or that I may relapse that they may have to ‘babysit’ me.  Many don’t take the time to understand my disease so they seem to want to avoid me to avoid having to talk about it.  I was a cheerleader before MS.  I am no longer a part of that cheer family in the way I used to be and people move on, feel like they have nothing in common with you anymore.  I found out who my really close friends are and discovered which ones were fake or simply just not strong enough to stand by someone with such a life altering disease.”

Breea’s motto for relationships is:

What’s your motto?

Diogo

Some reactions to Diogo’s MS diagnosis have been less than positive, but he’s managed to rise above and see who his true friends are.

“It was a great learning process, but it was worthwhile. It makes you a stronger person, more clear-sighted if you stand up and fight. There is a time that you struggle with boring situations related to MS. But on the road there is a moment were maturity arises and you can handle the situations in a different way. There are good and bad people. I get to know both types and learn to deal with them.”

Diogo’s motto for relationships is:

What’s your motto?

Brenda

Brenda was diagnosed with MS at the age of 20. Her MS diagnosis came with new fears and insecurities, but Brenda didn’t let them hold her back.

“At first I locked myself away a lot , I didn’t want people to hug me or touch me or ask me anything about my life, but MS also strengthened my ties with the closest people in my life, and forced me to keep going, accepting others’ help and company, and slowly learning to live with what happened to me. So I came out of my shell slowly, first building a new relationship with my body and then with my surroundings.”

Brenda’s motto for relationships is:

What’s your motto?

Khaoula

Khaoula was 15 when she was diagnosed with MS. She was apprehensive about people’s reactions at first, but she soon came to terms with her MS.

“After being in denial for a while, I became strong enough to accept things and face people.”

Khaoula’s motto for relationships is:

What’s your motto?

MS Uruguay is organising a get-together to discuss what it’s like to be a young person with MS in Uruguay. Young MS’ers will be encouraged to talk about their experiences and make a collage with parts of the body and phrases relating to MS.

The event will take place in Montevideo on World MS Day.

Quite a lot going on in Palestine, Egypt and Morocco this year!

In Palestine, a young person with MS is organising an MS Walk in collaboration with the MS Society of Palestine. The event will take place on 25 May. The MS Society will also be holding a lecture on World MS Day – details to follow!

In Egypt, MS Care will be organising a series of events including Run for MS, a gig and a football match.

Moroccan MS Society will be holding a seminar about MS that will bring together doctors, people with MS and the Ministers of Education, Manpower and Health.