A powerful letter to my MS

bouquet of pink flowers beside white ceramic mug

“I thought you were just another Monday morning case when you walked in,” my consultant said, followed by lots of apologies and the promise that I would be very well taken care of.”

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An Open Letter To Those Without MS

I’ve known about this letter for a while now, and sometimes I feel the need to read it again, as if by reading it once more, people around me will understand what having an incurable illness feels like even when they’re not the ones reading it. However, at the end of the day, I cannot […]

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World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself […]

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World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself […]

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Happiness and MS

woman doing hand heart sign

In short, I felt like gutting my immune system from my entrails. My mind from my brain. And my eyes’ life experiences dunked in a glass jar filled with ethanol.

Life with MS. Nobody said it would be easy. Or, straightforward.

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MS, fake or not

pexels-photo-1058388

The assumption that of the many invisible symptoms associated with MS, some can be faked – as if they’re digitally pasted on someone – is flabbergastingly prejudiced and foolish. It portrays a clear lack of understanding of what MS as a neurodegenerative illness is and what its impact is one those living with it.

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MS News: May 2017

Research worker

2017 Meeting American Academy of Neurology (AAN) Aubagio in people at risk of MS Cladribine Gilenya Lemtrada long-term data Lemtrada and black people Opicinumab Siponimod Importance of early effective treatment NEDA challenged Measuring disease activity in progressive MS Predicting risk of conversion to SPMS Risk factors for MS in children and teenagers

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MS News: April 2017

Research worker

The latest MS news about clinical trials, research, treatments, mental & emotional health, diet and lifestyle, including highlights from Barts MS Blog

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MS News: March 2017

Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017 Society Releases Statement on American Health Care Act National MS Society Urges Lawmakers to Oppose American Health Care Act Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part […]

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MS News: January 2017

Go red to Kiss Goodbye to MS campaign! Supporters in County Donegal asked to Help Kiss Goodbye to MS Supporters in county Longford asked to Help Kiss Goodbye to MS Co Leitrim people are being asked to help ‘Kiss Goodbye to MS’ Highlight! The top 10 drug launches of 2017 The year in new drugs

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MS News: October 2016

Highlight! Influenza, Vaccinations, MS Brain cognitive exhaustion is real for people with Multiple Sclerosis

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MS News: July 2016

The latest news on MS research, clinical trials, treatments, mental health, diet, exercise, lifestyle as well as business news and videos.

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MS News: August 2015

Vitamin D research was once again a recurring news story this month, with more studies linking lack of vitamin D to MS. Also widely reported was the news Novartis bought GlaxoSmithKline’s remaining rights to Ofatumumab, an investigational multiple sclerosis medicine, for up to $1 billion. Highlight! Gene study finds link between multiple sclerosis and low […]

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MS News: April 2015

Research news Miconazole and clobetasol may be effective as multiple sclerosis therapies Drug Derived From Sea Anemone Shows Promise Against Psoriasis, MS Novel Drug From Nature Shows Early Promise ‘Brainbow’ illuminates cellular connections MS Association of America releases 2015 multiple sclerosis research update B Vitamin Promising in Progressive Multiple Sclerosis Phenytoin protects against optical damage […]

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MS News: December 2014

Well, it was a busy December, in more ways than one. I hope you all had a great Christmas and wish you the best for 2015. From the amount of research and clinical news we keep hearing about month after month, I can only be optimistic for the future. A cure will not happen tomorrow, […]

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MS News: October 2014

“54 New MS Research Projects to Receive Millions of Dollars in Funding.” I can only jump up and down like a child at Christmas reading about this. Even if or when we’re struggling with our illness, we know that lots is happening to help us forward in life. So please, enjoy the list with research & clinical trial news, updates on current medication and business & general news.”

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MS Societies around the World

Oops… We can’t find the page you’re looking for. Maybe this page might help? MS Societies around the World (2018) Or, why not travel around IMSM with me by visiting these pages? A powerful letter to my MS Do I have stupid written on my forehead? MS anxiety I’m an ex and I’m loving it! You […]

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World MS Day 2014 in Ireland

Wednesday, May 28th is World MS Day. All over the world, people will organise events, wear orange, volunteer, work and/or attend conferences to raise awareness about an illness that so far, still cannot be cured. While 2014 is the ‘European Year of the Brain,’ this year’s World MS Day theme is ‘Access.’ Whether this means […]

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MS Trust 21 Challenge

“Here’s a breakdown of the challenge (you will be linked to the MS Trust website to enter). Like they say: “Keep the trust posted on the challenges you’re taking part in by sharing your stories and photos on Twitter and Facebook using hashtag #MSWeek!””

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MS News: April 2014

Research results Enhanced uptake of multiple sclerosis-derived myelin by THP-1 macrophages and primary human … 7thSpace Interactive (press release) – The pathological hallmark of multiple sclerosis (MS) is myelin phagocytosis. It remains unclear why microglia and macrophages demyelinate axons in … Textured insoles could be a positive step for people with MS UQ News – University […]

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MS News: November 2013

Thirty pieces of positive MS news published in November to brighten your day! Multiple sclerosis appears to originate in different part of brain than long believed Steven Schutzer, a physician and scientist at Rutgers New Jersey Medical School, has now found an important clue why progress has been slow – it appears that most research […]

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Featured On *

For my posts on the blog owned by the Irish MS Society, please visit the web page called MS Ireland’s MS & Me contributions For my contributions to the Novartis MS blog Living Like You, please visit my page called Blog Contributions to Living Like You, by Novartis Published on MultipleSclerosis.net, a platform to learn, […]

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Too warm for you? Heat sensitivity explained!

Uhthoff’s phenomenon is when changes in body temperature make a person’s existing MS symptoms worse, even a rise of 0.25°C to 0.5°C in the core body temperature is enough to cause upsetting symptoms in those living with MS.

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404 – File Not Found

Oh no! Something’s wrong here… Error code: 404 We can’t seem to find the page you’re looking for! Maybe you were looking for one of these? Home About Willeke A powerful letter to my MS MS anxiety Do I have stupid written on my forehead? I’m an ex and I’m loving it! You will survive! […]

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Home

Oh, no! Something’s wrong here… Error code: 404 We can’t seem to find the page you’re looking for! Maybe you were looking for one of these? Home About Willeke 3443 Needles, winner of the 2018 Best Blog Post at the Blog Awards Ireland Awards, organised by Ashville Media Group, Ireland A powerful letter to my […]

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Back soon!

Writing has been a bit slow lately. New content will find its way to IMSM soon!

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200 days

“To many, life with MS can seem like a book where letters have been replaced by numbers or where the cover can be too hard or too soft for its content. Because of this, I don’t want them to see what MS can turn into. I refuse to show them that there is no cure, I refuse to give them a reason to give up on me. In my view, it is very much a case of the illness being mine, but the tragedy theirs if I let them.”

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Raw

Social media often finds me catching my breath because of its reach, its intent and its questioning behaviour towards the mindset of the people they follow. After tweeting about the content of my blog, I received a rather ignorant private message from someone asking how raw my content, or I, can get and if I […]

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Ignorance

Oh, people will stalk you on Facebook on their smartphone, but do not ask them to find unprejudiced, trustworthy websites to learn something about your condition on that very smartphone. Quite often, they “will do so when they have time,” despite having their phone in their hands 50 times a day.

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Disable Inequality

It’s been rather quiet down here. The past four to five months, I’ve been involved in disability rights campaigns and had a long much-needed Christmas and New Year’s break. I’m now back to passive campaigning in some form or another while having the flu… it’s never boring in MS-land. With the Irish election campaign in […]

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★ Living Like You by Novartis ★

List of all my articles for the Novartis MS blog Living Like You in English, Dutch, Spanish, Italian and Arabic, including new ones.
Since I write every post in English, the Novartis editors have not yet translated all of them.

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Mental Health Ireland

Fasttrack General Practitioners, GPs, Family Doctors, Pharmacists, Dentists, Hospitals. It also provides contact phone numbers. Type your address in the box below. The Atlas will search automatically – choose an address from the search results. A map of your street will appear. Health Atlas HSE mental health support HSE mental health professionals National office for […]

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William Butler Yeats @150

William Butler Yeats: Irish prose writer, dramatist and poet; Nobel Prize for Literature in 1923. 1865-1939; compiled the Oxford Book of Modern Verse. My favourite Irish author would have been 150 years today. Ireland, myself included, celebrates a man so talented, his words still touches people today. Two years ago, and on my birthday, I […]

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News: July 2014

A lot of news on the research front in July, which can only be good. It’s a joy, relief as well as hope that one of those research projects or trials might lead to longer periods of remission, and perhaps a return to lesser disability for those with primary and secondary forms of multiple sclerosis. […]

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Wonder Woman Syndrome

“Having dissenting views on the verb ‘to pace,’ it is one I need to add seriousness as well as a lot more thought into. Having a Wonder Woman Syndrome is a term I sometimes carry with pride.”

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