News

MS Ireland are delighted to announce that we will be hosting our National Conference on Saturday, November 19th from 10am - 4:30pm.

When you receive a life-changing diagnosis such as multiple sclerosis, it can lead to mental health issues. Even if you have never suffered with anxiety before there can be constant worrying about your condition and how you might be.

We are happy to announce that Robin Bradley, Noelle Burke and Dr Rebecca Maguire were re-elected by the members on to the Board at the Annual General Meeting.  Thanks to all of you who voted for them.

Anne Restan was also elected back on to the Board by the Council delegates.

Following the AGM, there was a brief Board meeting where Maurice O’Connor was re-elected as Chairperson of MS Ireland and Jacinta Kelly was re-elected as Deputy Chairperson.

Congratulations to Maurice, Jacinta, Noelle, Rebecca, Anne and Robin.

NATIONAL AWARDS

Our 2022 National Annual Awards were presented at the Annual General Meeting which was held on zoom on 17th September 2022.

These awards recognise those who through their dedication and selflessness play a significant role in the lives of others and the progress of the Society. This year we are delighted to announce the three award winners are:

MS PERSON OF THE YEAR – SEAMUS BURKE

CARER OF THE YEAR – SUSAN STEPHENS

VOLUNTEER OF THE YEAR – CELINE O’ROURKE

In August of 2021, MS Ireland, in collaboration with Novartis launched a voluntary national survey to explore the societal cost of MS in Ireland. It was a repeat of one conducted in 2015. This was a cross-sectional, self-reported online survey aiming to evaluate the cost of MS in Ireland in 2022 and to compare the data of this survey to the 2015 data.

MS Ireland were delighted to address members of the Oireachtas yesterday as part of our Pre-Budget event in Leinster House. We welcomed 20 TDs and Senators to the Pre-Budget Submission Briefing and Panel Discussion.

The World Health Assembly (WHA), a subsection of the World Health Organization (WHO), has declared September Pain Awareness Month. Up until the 1980s, many people, including those in the medical profession, believed there was no pain associated with MS. Thankfully, research has caught up with patients. Surveys show that as many as two thirds of people with MS experience pain on some level. Yet, only this week when I was explaining my pain to a physio, her first reply was that pain is an unusual symptom of MS!

Dear Friends,

We in MS Ireland are lucky to represent a vibrant and strong community. Our mission is to enable and empower people living with MS to live the lives of their choice to their fullest potential. It is important to us that

we provide you with opportunities to have your voices heard on the issues that matter to you and to support the wider MS community on issues that impact you collectively. One such issue is the upcoming Budget. MS Ireland have submitted our Pre-Budget Submission for 2023 and your support of this would be greatly appreciated. On page 15 you will find a summary of our key asks accompanied on page 14 by a tear-out letter that you can complete and send to your local representative, asking them to support us.

One of our highlights this year was co-ordinating an art exhibition featuring 12 original artworks, created by people living with MS. This opportunity gave these artists the chance to express their thoughts and experiences on symptoms though art... and the results are incredible!! You will find an overview of the exhibition on page 8.

Some very exciting news in MS research was reported on earlier this year, when a group of researchers from Harvard University published a paper which found that the risk of developing MS increases 32-fold after infection of the Epstein- Barr virus (EBV). To read more about this, turn to page 18.

In keeping with this editions theme of taking action on the issues that impact us, we feature pieces by a number MS community members. In the first, Pat McCarthy discusses crime prevention for people living with MS on page 7. On page 20 Paul Dawson writes about Donegal’s first Changing Places step down facility. Page 19 offers a very special update from Yvonne McGoldrick, a writer who had their letter published in MS News almost 20 years ago!

We hope you enjoy this edition of MS News. As always, if you have any comments or would like to contribute, our Editor, Aoife Kirwan would be more than happy to hear from you – aoifek@ms-society.ie

So, here they are.

Tears caused by MS-related neuropathic pain in my left side. 

After 18 years of fighting nerve pain on my left-side and all its unpredictable associated issues, Summer 2022 brought everything to the fore. Thinking about it as the sum of every year with MS, had taught me to perfect saying things like, “Oh, I am fine!”. Clearly, I am anything BUT fine.

In plain English, right at this moment, I am going through the Mother of All Relapses. It is not going well.