World MS Day

Oh my god, I am (so not) dying!

WMSD logo

You know you’re on to something when you recognise your medical file from afar, even when it’s tucked between 15 other colourful medical records.

Sadly, this is a fact that even World MS Day on Wednesday, May 30th can’t heal. Nevertheless, as a global community of approximately 2.3 million people with MS, being part of the solution – a.k.a. spreading awareness and pushing for a cure – can be infinitely rewarding. On WMSD, I feel an even greater purpose to be part of that solution, whether it is by attending disability-related meetings and spreading the word afterwards, or simply by becoming more conscious of the problems people with MS and other disabilities are facing in the world today.

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World MS Day 2016

c42bdf6a253c4de6518ad04cbfc60affAs each day passes with life with MS, it’s worth noting that quite often, there is still a large information gap to be filled on a medical, emotional, societal and political level. Like many other disease groups, the MS community wants to enhance “Life with…” once a year in a bid to give more insight in what people without MS may otherwise take for granted.

In the past, I’ve written about World MS Day on my blog, as well as on the Irish MS Society’s blog and on Novartis’s MS blog. As a person living with the illness day in, day out, highlighting it has become a moral obligation. Continue reading

Irish public transport: access all areas?

The-new-footbridge-was-built-in-2004Ah, public transport in Ireland… Two-track train stations without elevators or escalators. Buses with seats for supposedly elderly or people with disabilities. Crutches or walking sticks that should indicate some form of disability…

People with disabilities have all been there. Literally too tired to walk another mile, they find steep, rusty, wet and windy staircases over train tracks instead of escalators and/or elevators in train stations. Absolutely, public transport in Ireland is slowly moving into the 21st century, with new footbridges being built with elevators inside them, but still… constructing and/or adapting them is not happening fast enough. Continue reading

World MS Day 2013

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World MS Day 2013 today.
While my diagnosis gave me a lot to think about,
it gave back so many things to cherish

and love: friends that care, family that
supports and a medical team

that is ready to tackle my every need.
While there might not be a cure yet,

I feel blessed to have received a second chance on
life to do right by others,

to lobby and to open the eyes of many.
Thank you everyone for walking along my
path of MS.
You are the best!

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World MS Day 2013: stay positive

 

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World MS Day 2013: raise awareness

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World MS Day 2012

Tomorrow is World MS Day, highlighting the need for more research, better medication and spreading awareness of what MS is and what it does to people who have it.

I often think that MS is a “lonely” illness. Because a lot of symptoms are misunderstood and/or not taken seriously by people who don’t have multiple sclerosis, MSers have to educate people in their environment about it. That doesn’t always go easily, and it often takes months if not years before some people finally realize that MS is a serious condition…

“Lonely” because very often people around you simply do not know what it feels like to have maddening eye pains, or extreme fatigue. This is not because those people are not ranked high on the IQ ladder, but because some symptoms are difficult to explain and rarely felt by people around you. Continue reading

World MS Day 2012

Tomorrow is World MS Day, highlighting the need for more research, better medication and spreading awareness of what MS is and what it does to people who have it.

I often think that MS is a “lonely” illness. Because a lot of symptoms are misunderstood and/or not taken seriously by people who don’t have multiple sclerosis, MSers have to educate people in their environment about it. That doesn’t always go easily, and it often takes months if not years before some people finally realize that MS is a serious condition…

“Lonely” because very often people around you simply do not know what it feels like to have maddening eye pains, or extreme fatigue. This is not because those people are not ranked high on the IQ ladder, but because some symptoms are difficult to explain and rarely felt by people around you. Continue reading

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