Children – the forgotten face of Arthritis

Arthritis Ireland goes Back To The School Yard with Devin Toner – Image 6Arthritis is often seen as an “old person’s disease” however, unfortunately it is also a chronic disease impacting on young people and children in Ireland with more and more cases appearing daily. There are over a 1,000 children living with the condition today in this country making them the forgotten face of Arthritis. A recent online survey conducted by Arthritis Ireland found that 41% of parents who have children living with the disease said their biggest fear was that their child won’t have a normal life into adulthood and 24% said they worry about their future. 70% of parents also said the most common response they get when they tell other adults their child has arthritis is amazement that the condition actually affects children in the first place.

Ireland has one of the lowest numbers of Consultant Paediatric Rheumatologists in Europe per head of population with the waiting list for diagnosis of children suspected of having arthritis being in excess of two years which is a very worrying statistic according to Arthritis Ireland.

Irene Collins daughter, Grace, was diagnosed with Arthritis when she was only two-and-a-half years old. Irene said: “We were shocked when Grace was diagnosed. It is a condition she lives with daily and people don’t always get what that means and the harsh impact it has on her childhood. Sometimes she’s in so much pain she can’t even walk”.

Arthritis Ireland is campaigning to change this perception. Today, with the help of Irish & Leinster Rugby player Devin Toner, they launched a new campaign to raise public awareness about Children with Arthritis and raise much-needed funds for support services to help children and their families. “Back To The School Yard” is a chance for people to organise a day of school yard games in their workplace or community and raise funds for Children with Arthritis.

Devin Toner said: “I am delighted to be involved with this campaign as Arthritis Ireland raises much-needed funds and awareness for children living with Arthritis. “Back To The School Yard” is such a great idea to get people involved, who wouldn’t love to go back and relive their childhood games? We all have a competitive streak, not just me!”

For more information log on to or call Emma on 01 6470205.


Arthritis Ireland & Team RAD join together in the fight against arthritis.

Arthritis Ireland are delighted to announce a new partnership with Team RAD, (Racing with Autoimmune Disease) for the coming year.

Kenny Bucke, Team RAD will take part in this years Working on a Cure Cycle on June 7th for Arthritis Ireland.

Kenny Bucke, Team RAD will take part in this years Working on a Cure Cycle on June 7th for Arthritis Ireland.

A cycling club for people with arthritis and other autoimmune conditions, Team RAD was established in autumn of 2014.

John Church, CEO of Arthritis Ireland said;

We are delighted to be supporting Team RAD. This partnership will help promote a positive message around Arthritis and that it can be managed effectively. We are firm advocates that regular exercise is a key part in managing a disease such as arthritis and that cycling, as a low impact sport, is a perfect fit.

As well as this members of Team RAD will be taking part in the Arthritis Ireland Working on a Cure Cycle in Wicklow on June 7th and will be raising funds to funds research into new treatments, and ultimately a cure for arthritis.

Team RAD was set up by Kenny Bucke, who first experienced symptoms of Rheumatoid Arthritis (RA) when he was 35.

“I want to show that you can still compete if you have an autoimmune condition. Training with a club like this means you’ll be with other people who understand your symptoms so we may have different ways of doing things.

I think that if you are into sports, you will find a way to do it. Even with arthritis. I hope that people will also look at our club and think that if we can cycle 100km with arthritis, then maybe they’ll think they can get out for a walk or go for a swim. It might motivate more people to get moving.”

 Over the course of the coming year, Arthritis Ireland and Team RAD will work together to increase awareness of Arthritis as a disease that affects younger people. They will also work together to promote cycling as a key part of managing their disease while looking to establish cycling groups, similar to the Arthritis Ireland walking groups.

As part of the partnership, the Arthritis Ireland logo will appear on Team RAD’s club kit which will further raise awareness at cycling events nationally of the partnership.

If you would like to take part in Arthritis Ireland’s Working on a Cure Cycle this June 7th, visit  To find out more about Team RAD, visit

Find the Fundraising Activity that SUITS You in 2015, Public Urged

Arthritis Ireland launches its 2015 fundraising events calendar

“Find the fundraising activity that SUITS you in 2015!” – That was the message fromD16110-23 Cormac Ó’Raghallaigh (11), Emily Haughton (11), both of whom have arthritis, and her sister, Mya (4), as they called on the public to beat the January blues by taking on a fundraising activity in aid of people with arthritis.

At the launch of Arthritis Ireland’s Calendar of Events 2015, Cormac, Emily and Mya urged people to get down to business on their New Year’s resolutions by taking on a run, cycle, organise a bake sale or any activity they wish to raise badly-needed funds.

D16110-18Arthritis Ireland, Head of Fundraising, Emma Barrett, said: “With just 12% of our income coming from the State, Arthritis Ireland must raise the remaining 88% in order to provide vital services that people with arthritis need to take control of their disease in communities across the country. Arthritis affects almost 1 million people in Ireland, including more than 1,000 children like Cormac and Emily, and they are relying on the support of the public in 2015.”

Check out our Calendar of Events 2015.

For further information or to contact our fundraising team about the different activities to choose from, please call (01)6470205, email or visit

Bring your own words… (BYOW)

By Fiona Keegan, Helpline Coordinator

We had a call to the Helpline the other day that got me thinking.

Arthritis Ireland.  Photo Chris Bellew / Fennell Photography Copyright 2013.

Fiona Keegan, Helpline Coordinator

The caller had been recently diagnosed with arthritis but was using a term we had not heard before. Our volunteers are updating themselves on a continual basis and we pride ourselves on our knowledge base of ‘all things arthritis’.

However, from time to time someone will phone us with the name of a form of arthritis that they have been diagnosed with and that we haven’t yet come across on the helpline.

This gets our inquisitive minds going.  We start googling, pulling books from the shelves, inquiring of each other ‘has anyone heard of ………..?’  We will not rest until we find out more about this diagnosis so that we can add it to our bank of knowledge.

IMG_0562Of course a lot of the time this as yet unheard of diagnosis is in fact just a different name for a more common form of arthritis.  It is interesting how different names are used by different people for the same condition.

I am guessing that the GP’s and consuItants are using the medical names that they learned during their training and then these need to be translated into the more common words we use when talking about arthritis.

I suppose it’s a little bit like the names for common vegetables we all use.  Who knew the humble cabbage is actually called ‘brassica olerocea’ or the everyday carrot ‘daucus carota’, never mind the lettuce in our salad ‘lactuca sativa’.  Try asking for those in your local supermarket and see how far you get…  On the other hand we on the helpline welcome the unusual words people use for arthritis as much as we welcome the everyday ones.

A colleague of mine mentioned recently that she was going to a restaurant which helpline high reswas BYOW (bring your own wine).  I realised that it is not only restaurants that can use this acronym.  Our helpline is also a BYOW – ‘bring your own words’.  So please call us on 1890 252 846 Monday to Friday 10am to 4pm and remember feel free to ‘bring your own words’.

Meghan’s Christmas Wish

Do you remember when you were a child on Christmas morning? Waking up early in the hope that Santa has arrived. Then, racing down the stairs and the sheer excitement of tearing off ChristmasMeghan-1 paper to reveal those shiny new toys?

For little Meghan, that’s not something she’s been able to cherish in her short life so far. Instead, her Christmas memories are of unbearable pain, noisy hospitals and scary injections.

Mairead describes her daughter as a “strong and determined little girl” so when she started crying with every movement, crying in her sleep, Mairead knew something was desperately wrong.

“It’s very hard to see your own child crying in pain; not knowing what is wrong and not being able to take that pain away,” Mairead says.

Meghan-&-MaireadAfter numerous tests in numerous hospitals, she and Meghan’s dad, Kevin, were reassured that their daughter had a viral infection that would pass in a number of weeks. Weeks passed. Meghan’s condition got worse. Mairead says that it was only when she was at breaking point – crying with frustration in the hospital – that she first heard about arthritis in children.

I found Arthritis Ireland’s number online and called them straight away. I told them my story, the hell we’d been through and fears we had. Immediately, they told me exactly what I needed to do to see an expert in the area.”

Within three weeks of that phonecall, Meghan was diagnosed with an aggressive form of juvenile arthritis.

After undergoing numerous procedures, including draining fluid from her joints and steroid injections, Meghan was started on high-tech biologic treatments to keep her disease under control.

“It was like a miracle,” Mairead says. “We saw an immediate improvement in her Meghan-&-Zoecondition and she was able to walk again. She has continued to improve and she is doing a lot better now.”

“When I look back now I know that phone call to Arthritis Ireland was the turning point. They gave me the direction to where I needed to go and the support and information to get there.”

This Christmas will be Meghan’s third and a special one for her entire family. Last year, she spent much of the festive period very ill in hospital. Thankfully, Meghan is doing better now and she is looking forward to joining her sister, Zoe, in tearing paper from presents on Christmas morning.

Meghan-2Will you make a special donation this Christmas to ensure that a child, like Meghan, receives the support they desperately need to control juvenile arthritis?

Donate online here now or call us on (01) 647 0205.

Budget 2015: What does it mean for people with arthritis?

With the dust settling from Budget 2015, a number of questions have been asked: what does it really mean for a person living with arthritis? Has anything else changed? What should I be looking out for? Andrew McCann, author of “Know Your Rights” tells us what Budget ‘15 really means for you and your family.

With all the news of changes to the Universal Social Charge (USC) rates and threshold, the reduction of the higher rate of tax from 41% to 40%, and plenty of other “noise” from Budget Day, practically what does it mean in your pocket and how will it affect your day-to-day life?

The key things to note are:

  • There were no changes to the eligibility to the Medical / GP Card – so if you are thinking of applying for a Medical Card, try the on-line tool as an indicator, but don’t be put off if you believe you may not be eligible. Applications for a discretionary card (when your income is above the means assessment) are still available although the process is very thorough and detailed medical and financial details are required to show the impact on your family without a card.
  • There were no changes to the Drug Payment Scheme – what this means in a very practical sense is that if you do not have a Medical Card, the maximum per month a family will have to pay for medications is €144 per month. Don’t forget always buy your medications in the same chemist as it helps at end of year to claim your tax back. You can get back €28.80 per month (20%) if you pay €144 per month.
  • There were no changes to the list of conditions on the Long Term Illness Card – What this means is that unfortunately arthritis was not added to the list. People with conditions such as diabetes, cystic fibrosis, spina bifida, epilepsy, cerebral palsy, MS (and a limited list of others) are automatically covered for free GP visits and medications specifically linked to their conditions

So, were there any benefits?

Yes, if you are on a long term illness payment such as Invalidity Pension or Disability Allowance or you are getting a Carer’s Allowance or Domiciliary Care Allowance payment, you will be entitled to the 25% Christmas bonus payment to be paid in December 2014 (unfortunately Illness Benefit is not covered under this scheme).

In addition, parents will receive an extra €5 per month per child in their Child Benefit payment i.e. €135 per child per month.

People in receipt of the Fuel Allowance will now also receive €100 per year Water Support payment, in quarterly instalments of €25, in addition to people in receipt of the Household Benefits package.

If you work part-time, you can now earn €231 per week without paying any USC, that is, any increase of an additional €38 per week (from the previous rate of €193 per week). What that means is that anyone working on the minimum wage (€8.65 per hour) can work at least 26 hours per week without paying USC or tax. Also, if you go over this amount the rate of USC you pay is reduced. For example, someone earning €20,000 per year previously paid USC of €13.82 per week whereas now they will only pay €10.47, a saving of €3.35 per week

In addition, single people and one income married / civil partnership households were granted an increase of €1,000 in their tax band. What this means in a very practical sense is that they can now gain an extra €200 per year i.e. €3.85 per week if they earn €33,800 as a single person and €42,800 as a one income married / civil partnership. If they do not earn up to these amounts, they will not gain anything from the changes.

One other small change not discussed in the news was the increase in the “Rent-A-Room” scheme, which will now allow someone get €1,000 per month tax free if renting a room in their house compared to only €833.33 tax-free previously.

With all the controversy with Irish Water, a tax credit of 20% will now be granted in 2016 on the amount you pay in 2015. For example, if your water bill is €300 in 2015, you will get €60 back as a tax credit in 2016 but if your bill is €600 in 2015, the most you will get back is €100 in 2016 (20% of a maximum of €500).

For further information, Andrew’s new book “Know Your Rights – Budget 2015 A Practical Guide” will be available from later in the year. You can follow Andrew on Twitter @YourRights_ie or on Facebook – or check out his website

Ireland in the Midst of Arthritis Crisis Affecting Three Quarters of a Million

New online video campaign launched to shift stereotypes at the start of National Arthritis Week

Ireland is in the midst of an arthritis crisis with three quarters of a million adults and more than 1,000 children living with it, making it the most common cause of disability nationally. That was the key message highlighted by Arthritis Ireland today to mark the start of National Arthritis Week 2014 as it launched a major new awareness campaign to shift public perceptions about the disease.

This hard-hitting online video, named Arthritis a crisis? has been launched in response to new research which found that many of the old stereotypes about arthritis remain prevalent in the public psyche today.

Watch the video here:

The two and a half minute clip tells the story of five people – children and adults – who are National Arthritis Weekliving with arthritis. It demonstrates in harrowing detail the true impact that the disease has on their daily lives and their struggle to control the condition, both physically and emotionally. With lines such as “I have arthritis. It’s my lifelong partner. I will die before it does”, the video looks to communicate exactly what it feels like to have a lifelong, incurable, chronic disease. All of the people in the video are living with arthritis, including the extras.

Arthritis Ireland CEO, John Church, said: “People with arthritis in Ireland are fed up living with the stereotype that arthritis is just a few aches and pains that just affects older people, when in fact the reality is very different. Ireland is now in the midst of an arthritis crisis. It is the single biggest cause of disability here, affecting three quarters of a million people from newborn babies right through to the elderly. This figure is expected to by 30% to over a million by the year 2030. Funds are urgently needed to address this; to invest in research to find new treatments and a cure, and to provide services to help people control this devastating disease.”

In a survey of 1,000 Irish people by Behaviour & Attitudes, it was found that those who prioritise arthritis as a cause worth supporting are a lot more likely to have direct personal experience of it, pointing to a lack of understanding amongst the general public. The research found that in particular younger adults know very little about arthritis. However, it was found that people would be much more willing to support the cause, knowing that it affects almost one million people, both young and old, and that its impact on a person’s ability to carry out normal, everyday activities causes serious levels of depression and social isolation.

Fiona Poona (44), who is one of the five main cast in the video, said: “Having lived with arthritis for the last 11 years, I know full well what suffering in pain while still looking well is all about. Trying to explain to people what it’s like to have an invisible, chronic condition is extremely difficult and very frustrating. I believe that this video will lead to people having a better understanding of what it’s like to live with arthritis.”

For anyone who would like to support our vital services. Text JOINTS to 50300 to donate €4 or you can donate online here.