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 www.medicalcard.ie 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 www.openpress.com later in the year. You can follow Andrew on Twitter @YourRights_ie or on Facebook – facebook.com/YourRights.ie or check out his website www.yourrights.ie

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.

Children with Arthritis Tell Conference They Are Fed Up ‘Waiting in Pain’

Arthritis Ireland Calls for Dedicated Paediatric Rheumatology Unit to Be Established Urgently

Children with arthritis today told an Arthritis Ireland press conference that they are fed WaitingInPain-47up waiting in pain and called for a dedicated fully staffed paediatric rheumatology unit to be established to enhance patient care. The calls were made at ‘Waiting in Pain’, a juvenile arthritis (JA) Children’s Conference, where it was revealed that the waiting list for children with suspected arthritis now stands at more than two years, putting children at risk of permanent joint damage.

More than 1,000 children are living with JA in Ireland today, making it as common as childhood diabetes in under 12 year olds. However, the paediatric rheumatology service at Our Lady’s Children’s Hospital, Crumlin (OLCHC) do not have a dedicated clinical unit. As well as this, there are just two consultant paediatric rheumatologists (both of whom have general medicine responsibilities also) and one HSE funded rheumatology clinical nurse specialist appointed for the entire country.

WaitingInPain-34The lack of facilities, resources and inadequate staffing levels is leading to waiting lists of more than two years for children with suspected JA. This is despite recommendations from the British Society for Paediatric and Adolescent Rheumatology (BSPAR), which states that children with suspected JA must be seen by the paediatric rheumatology team within four weeks of the referral begin made.

Speaking at Waiting in Pain, Danny DeVaal (aged 16) said: “Having been diagnosed with arthritis when I was just 7-years-old, I know just how important it is to have quick access to your rheumatologist to get the treatment you need. Pain is merely a component which contributes to a larger picture with JA. Many people cannot comprehend the daily struggle children with arthritis endure; the endless hospital appointments, and normal childhood activities we are forced to stop due to arthritis. If we are to lead normal lives, we need access to treatment within a reasonable timeframe. At the moment, we are waiting in pain and it’s not acceptable.”

Dr Orla Killeen, one of only two consultant paediatric rheumatologists in Ireland, lent herWaitingInPain-36 support to the campaign also. “Ireland has one of the lowest levels of paediatric rheumatology resources in Europe per head of population. Juvenile arthritis can be an aggressive, potentially lifelong condition that can lead to serious disability and causes intense pain for children.  Early intervention with aggressive treatment is essential to prevent juvenile arthritis extending to multiple joints and result in a more positive outcome for such children. If left untreated, it can lead to permanent muscle wastage, joint damage and deformity, not to mention the trauma that a child and its family experiences coping with such a new diagnosis. Children deserve better”.

At the conference, Arthritis Ireland released its pre-budgetary submission on paediatric rheumatology, which called for a dedicated appropriately staffed paediatric rheumatology clinical unit to be established at OLCHC with an additional consultant paediatric rheumatologist appointed including allied health professionals, along with two additional rheumatology clinical nurse specialists to reduce waiting lists and enhance patient care.

Arthritis Ireland CEO John Church said: “Children are being left in uncontrolled pain and put at risk of permanent joint damage due to a lack of resources and facilities in paediatric rheumatology in Ireland. It is vital that the recommendations contained in Arthritis Ireland’s pre-budgetary submission are adopted as a matter of urgency if waiting lists are to be reduced to the recommended levels.”

WaitingInPain-50As well as Arthritis Ireland’s campaign for better paediatric rheumatology services, the organisation provides a wide range of supports for families living with JA, including a JA helpline, pain management workshops, JA Family Day events, a JA Road Trip weekend for teenagers and a comprehensive information service.

Mr Church added: “No component of our vital JA programme receives state funding so we are heavily reliant on the support of the public to continue providing services. This JA Month, I am asking the public to make a big difference in the lives of children with arthritis by texting ‘JA’ to 50300 to donate €2.”

Click here to read our full pre-budgetary submission.

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.