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 fundraising@arthritisireland.ie or visit www.arthritisireland.ie.

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.

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.

Living Well Hero: One man’s positive transformation thanks to an arthritis self-management course

Stuck in a rut. That’s exactly how Quentin Carrick found himself after he was self-managementdiagnosed with fibromyalgia.

Chronic fatigue and pain quickly diminished his ability to complete even simple tasks, leaving him unable to stand for any length of time or drive long distances.

The 47-year-old explained: “If I went for a walk, the fatigue would hit first and then the pain, especially in my hips and knees. I stopped going out because I’d be exhausted by the time I got to the pub. I just didn’t see any light at the end of the tunnel. I was lucky work allowed me to do a two and a half day week, but I had no quality of life.”

That was three years ago, and Quentin’s grim situation continued until he enrolled in an Arthritis Ireland self-management course earlier this year.

Learning how to manage his condition triggered a shift in attitude, as he recalled: “Going into the course I hadn’t had one positive thought for three years. I used to run competitively so my idea of being fit and healthy was running long distances. The thought of a three-minute walk was a waste of time, but the course changed my mindset. Instead of focussing on not being able to run five miles, I started concentrating on being able to do a five-minute walk. I now make a weekly action plan and completing it gives me a great feeling of achievement. I also switched to an automatic car which makes driving easier. Previously I would have seen this as giving in to fibromyalgia. Now I see it as something that can help me function normally.”

QQuentinCarrick (1)uentin, from Hartstown in Dublin, is also rebuilding his social life.

“For the last Ireland rugby match I met up with a friend to watch it in the pub”, he said.

“Previously, I’d just not turn up because it was easier than having to explain myself if I was sore and needed to go home early. I’ve stopped avoiding exercise and when I can manage to walk for an hour a day I’ll plan a holiday, something I haven’t done in three years.”

Learning new ways of managing his condition has also given Quentin a huge confidence boost.

He insisted: “I’m a changed man. I’m happy now that I’ll be able to stay in work and I feel so much more positive.”

Arthritis Ireland’s autumn round of life-changing self-management courses gets underway in September. Click here to find one close to you.

Making it count: Paying tribute to a loved one with arthritis by raising funds for Arthritis Ireland.

When Anna Nolan-Pang was invited to speak at Arthritis Ireland’s JA Family Day for JonathanandwifeAnnachildren with arthritis, the visit was an eye-opener for both her and her husband Jonathan.

Having been diagnosed with JA at the age of two, Anna, from Dundalk, grew up without access to many of the supports and services provided by Arthritis Ireland today.

Last year, she stood proudly at the finish line as Jonathan completed his first Irish marathon, a feat which raised €400 to go towards badly-needed support services for Arthritis Ireland.

And the couple’s visit to a JA Family Day was a chance to see where some of that money is being spent.

A delighted Anna explained: “I really love that there’s a family day for kids, and it’s great for their siblings to be able to talk to other families in the same position. When I was younger my siblings didn’t really know what was happening with me because my parents were always busy taking me to appointments.”

She added: “I’ve never known a life without arthritis. Growing up I missed lots of school because of it. I couldn’t go out to play in the yard because I always had sore legs. My mam would drop me right at the door of the classroom. I felt like I stuck out as someone different. It was very difficult for my parents because at the time there wasn’t as much knowledge about arthritis and there wasn’t a well developed support network.”

Anna’s condition deteriorated throughout her teens until she had both hips replaced at the age of 22. Yet it didn’t stop her from jetting off to college in California where she first met Jonathan.

He recalled: “I didn’t know much about arthritis before I met Anna. In fact I was really confused when she told me about it because I didn’t know young people could have it too. She has always had a great attitude and she makes sure to tell me whenever she’s inhibited in some way so she can stop and rest.”

After tying the knot in August 2012, Anna and Jonathan initially settled in California but have since returned to Anna’s home in Louth.

And a major factor in their move was the medical and practical support available for people with arthritis in Ireland.

Anna revealed: “I’ve had the same rheumatologist since I was a child and they know my history, so it made sense to move home. I’ve also been lucky enough to attend support meetings and information talks organised by Arthritis Ireland over the years and that has really helped me to manage my condition. I even got involved in an Arthritis Ireland campaign a few years ago and that taught me not to be embarrassed about arthritis and to be more open about it.”

JonathanPangwithhisMarathonTshirtInspired by his wife’s positive attitude and the easily accessible support offered by Arthritis Ireland, Jonathan came up with a plan.

The keen runner signed up for last October’s Dublin City Marathon, raising funds for Arthritis Ireland along every step of the 26.2 mile course.

The experience taught him a lot about the generosity of the general public.

“No one likes to ask for money but when I started fundraising I quickly noticed how generous people here are when it comes to supporting charities”, he said.

“I put a post on my Facebook page and people who saw it were very quick to help out.”

He added: “When we went to the JA Family Day it was great to see that the money is being put to good use. I’m so pleased that I was able to help in some small way in Anna’s honour and hopefully I’ll do it again.”

And his delighted wife is thrilled to have inspired such an impressive fundraising effort, insisting: “I was so proud of Jonathan when he did the marathon and we really noticed that people were so supportive. Arthritis is much more common than we think and most people know someone who has it. Thankfully they understand the importance of supporting causes like this because it really does make a difference.”

*Arthritis Ireland would like to say a BIG thank you to Jonathan for his generous support and congratulations on completing his first Irish marathon!

Do you have a family member or friend willing to raise funds in honour of people with arthritis?

Here’s how they can do it:

  • Choose your own special challenge, whether it’s a triathlon, a walk, a skydive or something completely different.
  • Register with Arthritis Ireland here and receive your “I’m doing it for my …” t-shirt as well as tips for successful fundraising.
  • Reach out to your family and friends – in person and online – and invite them to support a worthy cause.
  • Enjoy the event and return the funds to Arthritis Ireland where they will be used to fund our work in branches all over the country.

Register for the Dublin City Marathon here today.

Register for another physical challenge around the country here today.

Medical Cards: What We Have Achieved and Why We Need Your Voice Again

By John Church

I’m writing to update you all on our medical card campaign, to thank you for the people with arthritisextraordinary support we’ve received so far and to urge you to continue fighting for people with arthritis by making your own submission on medical cards to the HSE.

Over the last month, I’m happy to report real progress. Having been inundated with calls and emails to our helpline, a great movement of people with arthritis has grown, gathered momentum and prompted a change.

This pressure culminated in an emergency meeting with the Minister for Health James Reilly last week, at which he apologised unreservedly to me for the scandal and promised me that he would fix the system so that medical cards are awarded on medical grounds too.

But we still have a lot of work to do to ensure that arthritis is on the list of approved conditions for a medical card. It is vital that the wave of anger and frustration around medical cards that has been channelled through our helpline, branches and on social media is now felt by the key decision makers and policy makers in the HSE and Department of Health. (Make your submission here now.)

It all started thanks a phenomenal response to our survey three weeks ago which meant we were the only patient organisation able to present Minister Reilly with comprehensive data on the impact of the medical card scandal on our community.

The results of that survey are deeply concerning. Of the 1,200 people who took part:

  • A quarter (23%) said they have/had a discretionary medical card
  • Almost two thirds (60%) of those admitted it had been either taken away or put under review
  • Of these, 69% have had their card taken away or placed under review in the last 6 months
  • It is an issue of even greater concern for children living with juvenile arthritis as 76% of parents said their discretionary cards had been taken away or placed under review

Below is just a selection of people’s responses when asked, “What does having the medical card taken away mean for you?”

  • “Have not been able to afford medication and have not had my Enbrel (medication) since February.”
  • “I am very upset and it is causing me a lot of stress and I will not be able to afford to pay for meds and pay for doctor and I am going into hospital for another knee replacement on 18th of June and am so worried about the operation .I should not have this stress as well.”
  • “It’s been 3 months now and I’ve called every 2 weeks and still no decision. Without my medical card, I won’t be able to afford the monthly infusions or daily meds I need to function on a daily basis…I’m so worried as without my medical card I won’t get the treatment I need and will end up completely disabled.”

I would like to say a HUGE thank you to everyone who took part in this survey. Having this data really strengthened our negotiating position with Minister Reilly and allowed us to feed the media’s appetite for proper statistics on the medical card issue. Being the only patient organisation to conduct a survey meant that the media were quick to cover our side of the story and we secured great coverage across print and broadcast media. Here are just a few samples: RTE News, Irish Examiner & Irish Independent.

We also conducted a cost analysis where we found that the added financial burden on a person with inflammatory arthritis was on average more than €5,500 per year, of which €3,500 is covered by a medical card. And in the case of juvenile arthritis, the average cost on a family was more than €7,000 per year with the medical card covering €3,500.

Costs covered by the medical card include medication, GP visits, blood tests, vaccinations, orthotics, eye tests and podiatry. Additonal costs not covered by the medical card include hospital travel expenses, private physiotherapy and occupational therapy, splints, sun cream and additional heating costs.

Minister for HealthAll of these figures, combined with the human stories of people who have lost their medical cards, allowed me to make a compelling argument to Minister Reilly as to why people with arthritis on expensive medical treatment should be in receipt of a medical card.

As mentioned above, Minister Reilly accepted that people had their cards unfairly withdrawn and said he was determined to introduce a system that will award medical cards based on medical need. I also asked him to consider the views and feedback from patients and patient organisations, like Arthritis Ireland, on what conditions should be included on the new system and he confirmed that he would.

With this in mind, the HSE are now taking public submissions on what conditions should entitle a person to a medical card. This is your opportunity to explain to the HSE why people with arthritis, who are forking out for expensive medical treatment every month, should be automatically entitled to a medical card. The application is simple, you can do it by post with this form here or online here.

Arthritis is often described as an invisible condition; this is your opportunity to let the HSE know the massive impact it has on your life.

By filling out the submission at the link below you can make a big impact on the HSE’s decision to ensure that arthritis is on the list of illnesses that are covered.

Read our submission to the HSE here.

Click here to fill out the form online now or for more information, please call our helpline on 1890 252 846.

Thanks again for your support. Change does not happen without your voice.

John Church, CEO