How to cope with winter weather by the Galloping Grandma, Sally Borst

Sally Borst, blogger and “Galloping Grandma”, shares with us her account of “How to cope with winter weather.” (Sally lives with severe rheumatoid arthritis,  plus osteoarthritis).

Here in South West Ireland after a balmy autumn with hardly a drop of rain, we have suddenly been plunged into winter with icy frosts and wind straight from the Arctic, and our local mountains are covered in snow. So I thought it timely to come up with suggestions as to how to cope with your RA and the cold.

It goes without saying that you should dress warmly, preferably in several layers as this traps and warms air between the layers from your body heat. Trousers and thick socks are fine for me, but if you wear skirts, then warm woolly tights will keep your legs snug. I have difficulty putting on socks so I tend to wear Ugg boots that don’t require any socks as they are full of sheep wool and can be pulled on easily.

For outside a woolly hat, gloves or mittens. Gloves can also be layered to keep your sore hands really cosy, and a warm scarf can keep your neck and the bottom part of your face warm too! I also have neoprene mittens which are brilliant and can be worn under gloves. It’s really important in cold weather to keep hydrated, or your system will rapidly cool down. So lots of water and possibly (like me) a hot port of an evening! If possible try to drink warm water and apply this also to the outside of your body by lazing in a hot bath or swimming in a heated pool.

Swimming is excellent exercise and even if you have chronic pain it is vital to exercise in some manner. Walking at whatever pace you can manage is really good for you and if you have two enthusiastic dogs like me, give in to their pleading looks and go for a stroll. I can’t walk very far, after my two feet operations, but I try to go a couple of yards further each day. Also, I find just getting around the house keeps me active or walking around the shopping mall when we go to Killarney.

It’s really important to watch you don’t slip on icy pavements or drives. Get someone to put down salt on the ground where you walk most often and make sure you have good treads on your supportive footwear. I have Fell walking boots that lace up around my ankles. Difficult to get in or out of without a lovely husband like mine, but well worth the effort.

I take Omega 3, and a Glucosamine-Chondroitin supplement daily which seems to help me, and certainly cannot harm. Everyone is always full of helpful advice as to what supplements to take, but I think different things work for different people and if a supplement seems to help, then take it.

Finally, there is a lot of debate as to whether people with RA (or even just arthritis) can foretell if a cold spell is coming – something to do with barometric pressure – that will set off a flare up. I definitely ‘feel it in my joints’ when the weather is about to change. The best advice I can give you on this is to immediately book a long holiday somewhere warm where you can laze in the sun, drink long cool drinks and swim off the beach in warm water – and, oh yes, a stroll down the beach at the water’s edge with your feet in the warm sand will do you a power of good as well!

Read more from The Galloping Grandma by clicking this link http://bit.ly/2gs6K7i

Gout ‘Disease of Kings’ stereotype is unfair and untrue

Arthritis Ireland challenge modern day Gout misconceptions

Gout is the most common form of inflammatory arthritis in men and women, and affects 1 in 40 people in Ireland. The condition can be extremely painful and if poorly managed can have a significant effect on quality of life. Gout doesn’t discriminate between rich and poor, fat or thin, men or women. Gout is often seen as a disease that affects people who are wealthy and overweight and popularly depicted as a ‘disease of kings’ with those affected stereotyped as overweight, middle-aged men who indulge in a lavish lifestyle of rich food. In fact, gout can affect anyone.

Des Warren, from Dalkey, Co. Dublin, was diagnosed when he only 30 years of age. Des commented: “I was on my honeymoon when I first noticed something was wrong. My foot and toe were swollen and extremely painful. The pain is the hardest part of the disease. People have a bemused, sympathetic response when I tell them I have gout. They see it as a disease I have caused, by making bad lifestyle choices. When the opposite is true, I was a fit, healthy man in my 30’s – I played sport, ate well and drank in moderation. My life changed overnight, and I have been managing it ever since.”

John Church, CEO Arthritis Ireland, said: “People with gout in Ireland are fed up living with the stereotype that gout is the result of living the high life and over-indulging when in fact the reality is very different. People with gout are faced with many challenges as they manage their disease. Arthritis Ireland is here to support those living with gout on their journey to wellness and break down the barriers and misconceptions people living with gout face. With this in mind, we are hosting an information evening on Wednesday 23rd of November and encourage all those living with gout to attend.”

Professor Geraldine Mc Carthy, Consultant Rheumatologist at the Mater Hospital, said: “Gout is the most common cause of inflammatory arthritis occuring in humans and is becoming more frequent with time. Up to one in forty adults may experience gout. People may have symptoms of gout for many years before they are diagnosed. That is why it is important to know there are highly effective treatments available for gout, once they are taken correctly. At the upcoming information evening, I will explain many aspects of gout, such as what causes it, how it is, diagnosed, treated and lifestyle recommendations to help manage your gout.”

Arthritis Ireland is hosting an information evening, ‘Living with Gout’, Wednesday 23rd November at the Radisson Blu St. Helen’s Hotel, Stillorgan Road, Blackrock, Co. Dublin, from 7pm (registration, networking & tea/coffee from 7pm and speakers at 7.30pm). Admission is free, and all are welcome. To book your place visit www.arthritisireland.ie or www.bit.do/GoutEvent. The information evening is kindly supported by A. Menarini Pharmaceuticals.

From left to right:                                                                                                                             Professor Geraldine Mc Carthy and Niall Heelan (A. Menarini Pharmaceuticals)

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565 Children Waiting in Pain

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Children with arthritis are fed up waiting in pain. 565 is the number of children waiting to see a consultant paediatric rheumatologist for the treatment of childhood arthritis, Juvenile Idiopathic Arthritis (JIA). The latest figures show that the waiting list crisis has intensified, with the number of children waiting in pain for over a year and a half increasing by an exponential 400% since January, 2016.

More than 1,200 children are living with arthritis in Ireland today, making it as common as childhood diabetes. However, the paediatric rheumatology service at Our Lady’s Children’s Hospital, Crumlin (OLCHC) is inadequately staffed to deal with the volume of children waiting to be seen. There are just two dedicated consultant paediatric rheumatologists appointed for the entire country to cater for children who live with constant pain in their joints and many other parts of their bodies. There is no cure for arthritis but with the correct standards of care children can have as normal and as active a life as possible.

The inadequate staffing levels are leading to waiting lists of more than a year and half for children with suspected arthritis. This is despite recommendations from the British Society for Paediatric and Adolescent Rheumatology (BSPAR), which states that children with suspected arthritis must be seen by the paediatric rheumatology team within four weeks of the referral being made.

Sixteen-year-old Darcy White waited for almost two years to be seen and commented: “Having waited for nearly two years to be diagnosed, I know how important it is to have quick access to a rheumatologist to get the treatment you need. Nobody knows this moredarcywhite than me, had I been seen earlier my condition would not be this aggressive. The pain is excruciating, it often brings me to tears. Arthritis is an aggressive autoimmune disease that isn’t going anywhere. Most days when I come home from school I lie in bed, I don’t
have the energy to go out. Arthritis came out of nowhere and changed my life completely; it stopped me from doing the things I love, and I hate it for that. I wish I didn’t have to fight arthritis, it seemed a lot easier at first, but now I’m exhausted. But staying positive and hoping that one day we will manage the pain and I will go into remission, helps me to stay strong and more determined to fight. I wish with all my heart that the services for children with arthritis would improve, children should not be left waiting in pain. Don’t they realise they are robbing our childhood and causing irreparable damage physically and emotionally? Don’t they care?

John Church, CEO of Arthritis Ireland, said: “Ireland has only two paediatric rheumatology consultants, we are ranked as having one of the lowest number of paediatric rheumatologists in Europe. If left untreated, it can quickly lead to permanent joint damage, muscle wastage and deformity, not to mention the trauma a child and its family experiences. Children deserve better.”

This is a national crisis, so enough is enough. As part of National Arthritis Week, Arthritis Ireland are calling for the urgent appointment of a third consultant paediatric rheumatologist to be appointed at OLCHC to help ease the huge burden on the already overstretched services. Children on waiting lists are not just waiting in pain; they are also at risk of permanent, irreversible joint damage that impacts on their ability to live a normal a life as possible.

To support Arthritis Ireland sign our petition by clicking here or make a donation by clicking here .

Sona announces Arthritis Ireland as one of its new charity partners

Sona, Ireland’s leading producer of nutritional supplements and herbal remedies, has announced that it has formed a new charity partnership with Arthritis Ireland.

The announcement marks Sona’s continued support of active lives, through a partnership that over the next 12 months alone will see €10,000 in much-needed funding raised for Arthritis Ireland.  The aim of the partnership is to spread awareness of the range of vital support and information that is provided by an Irish organisation committed to working towards a future free from arthritis.

Arthritis Ireland will be given a fantastic platform as part of this partnership to promote its services across Sona’s products, through information that will appear for a limited time on the brand’s packs. Sona’s extensive product range includes a number of effective solutions for bone and joint care ideal for those suffering from arthritis, including Sona JOINTPLAN, Sona Glucosamine Sulphate, Sona Omergan and Omega 3. 

Arthritis Ireland, which was founded in 1981, provides support to communities across the country to help people manage and control this devastating disease. For over 30 years, the charity has actively driven grassroots advocacy so that a voice for Irish people living with arthritis can be heard. Arthritis Ireland also assist the Irish medical community in finding solutions to controlling the effects of arthritis.

Arthritis Ireland cannot directly cure those affected. However, with the help and support of Sona over the coming years, the charity aims to help people take control of their disease while investing in research to find new treatments and, ultimately a cure.

CEO of Arthritis Ireland, John Church welcomed the partnership saying: ‘We are thrilled to be chosen as the new charity partner for such an iconic brand as Sona Nutrition and I want to thank them for choosing to support Arthritis Ireland and help us in our work across Ireland.

As the oldest, established producer of nutrition in Ireland, Sona is the one name in that market that the nation can turn to with confidence. I can guarantee that every cent raised from this partnership will go a long way in making a huge difference to those living with arthritis, reminding them that others care and that they are not alone. Thank you so much to all involved’.

Ohan Yerganharsian, Managing Director of Sona said: ‘It’s impossible to comprehend the challenges that people across Ireland living with arthritis face on a daily basis, however, the work of Arthritis Ireland provides invaluable support to those in need of help. We’re delighted to extend our support to this very worthy cause which we believe will change many people’s lives for the better’.

For more information on Sona Nutrition and Arthritis Ireland, see www.sona.ie / www.arthritisireland.ie

To celebrate the launch of the partnership Sona Nutrition are offering Arthritis Ireland members this special offer:

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BENEPALI®, the first etanercept biosimilar referencing Enbrel®, is now available to Irish patients

BENEPALI®, the first etanercept biosimilar referencing Enbrel®[i], is now available in Ireland[ii] for the treatment of adults with moderate to severe rheumatoid arthritis (RA), psoriatic arthritis (PsA), axial spondyloarthritis (AxSpA), and plaque psoriasis (PsO)ii.

The originator product Enbrel®, available to patients through the HSE’s High Tech Arrangements (HT) programme, cost the Government approximately €60 million in 2014 –  the second most-prescribed product on the scheme[iii].

“Anti-TNFs such as etanercept have revolutionised the outlook for patients living with conditions such as RA,” said Professor Gerry Wilson, Professor of Rheumatology at University College Dublin and Consultant Rheumatologist at St Vincent’s and Mater University Hospitals, Dublin. “The availability of an etanercept biosimilar may increase patient access to these products and allow resources to be directed toward new innovative medicines.”

Around 915,000 people in Ireland are living with some form of arthritis[iv], making it the single biggest cause of disability in the country.

BENEPALI’s® availability comes shortly after the publication of the Health Protection Regulatory Authority’s (HPRA) first biosimilars guide[v], which is targeted at doctors and provides information on the regulation, prescribing, dispensing and traceability of biosimilar medicines in Ireland.

Mr John Church, CEO of Arthritis Ireland, also welcomed the availability of BENEPALI®: “Arthritis Ireland is glad that the significant number of people in Ireland with RA, PsA, AxSpa and PsO may now avail of etanercept at a lower cost. This may potentially expand the number of patients who can benefit from this important treatment option.”

“It is great news for patients that, with the introduction of our first biosimilar in Ireland, doctors have a new treatment option that may help reduce expenditure and support ongoing patient access to anti-TNF therapy,” said Mr Darren Clarkson, Regional Director, Biosimilars UK/Ireland at Biogen. “Biogen has a rich heritage in biologics, and we are proud to be launching the first etanercept biosimilar in Ireland.”

About BENEPALI®

BENEPALI (etanercept), formerly known as SB4, is the first biosimilar referencing Enbrel, and is the first subcutaneous anti-TNF biosimilar available in Ireland. It was developed by Samsung Bioepis, a joint venture between Biogen and Samsung BioLogics.  The EC approval was based on a robust preclinical and clinical data package submitted to the European Medicines Agency by Samsung Bioepis. The data in the preclinical submission leveraged sophisticated molecular analytics and technical development. Confirmatory data from well-controlled, head-to-head Phase 1 and Phase 3 clinical trials compared BENEPALI to Enbrel. The 52-week, doubleblind, Phase 3 study randomised 596 patients with moderate to severe RA despite methotrexate therapy, across more than 70 sites in 10 countries to receive BENEPALI or Enbrel in a 1:1 ratio. Analysis of the primary endpoint at week 24 showed that BENEPALI had equivalent efficacy to Enbrel, as shown by an ACR20 response of 78.1% in the BENEPALI arm versus 80.3% in the Enbrel arm.

Network Ireland Kildare Branch chooses Arthritis Ireland as “Charity of the Year”

network-ireland-kildare-branch-picks-arthritis-ireland-as-luncheon-charityNetwork Ireland Kildare branch have announced Arthritis Ireland as Charity of the Year for their annual luncheon this November, as they raise money for the Arthritis Ireland Children and Youth Programme. Arthritis is a condition that affects more than 1,200 children in Ireland, making it about as common as childhood diabetes. Arthritis Ireland provides much-needed services and educational programmes to help children and teenagers live well with arthritis.

Lorna Norton’s son, Mark aged seven, was diagnosed when he was four years old. The Norton family are from Caragh, Naas. Lorna said: “When Mark was a baby, he could not raise his head, he missed all of his milestones, and we were told that he might never walk. Some days Mark cannot get out of bed because he is in too much pain, he cannot carry a schoolbag on his back because it makes his knees buckle underneath him. People often don’t understand that Mark has this condition, that there is anything wrong. The services Arthritis Ireland provides are invaluable to us. The family support, workshops, educational programmes allow Mark, and our family, to live as normal a life as possible. The day we picked up the phone to Arthritis Ireland was a turning point for our family; we could finally see a light at the end of the tunnel. So, I was delighted to hear that Network Ireland Kildare branch had chosen Arthritis Ireland as their charity of the year. I know the people of Kildare will come out in force to support this worthy cause and help continue the services they provide to my family and all other families living with this horrible condition.”

John Church, CEO Arthritis Ireland, said: “Arthritis is often seen as an “old person’s disease” with “a few aches and pains”. However, it is a serious chronic disease impacting on children and young people in Ireland, childhood arthritis needs to be given the respect and resources it deserves. We are delighted that Network Ireland Kildare branch chose us as their charity partner, their support will allow us to continue our children and youth services both in Kildare and nationally.”

Stella Johnson, Network Ireland Kildare President, commented: “We are thrilled to have Arthritis Ireland as our charity of the year. So many of us were not even aware children could have arthritis, the severity of the disease and the impact on their childhood. Arthritis Ireland is providing fantastic support for these children and families, and we want to help them continue and grow their services. Their positive, no limits attitude to managing the disease is exactly the ethos we try to instil in our own members. These children and families are an inspiration to us and I know the people of Kildare will rally to make this year’s charity luncheon the best one ever.”

Network Ireland Kildare Branch’s Charity Luncheon is always a joyous occasion filled with entertainment and opportunity with their annual charity raffle. The luncheon will take place on Friday the 18th of November at 1pm in the Osprey Hotel + Spa, Naas. All are welcome to attend and support their annual fundraising effort for this worthwhile cause. Members can avail of a special price of €65, guests/non-members are also welcome with a ticket price of €75. Places are limited, so book now to avoid disappointment at http://www.networkireland.ie/events/eventsurl/annual-charity-lunch/.

Network Ireland Kildare Branch is an organisation for women in business, the professions and the arts. With eight branches around Ireland, Kildare is currently one of the largest, providing a forum where women in business, the professions and the arts can exchange ideas and increase their connections and contacts.

 

Arthritis Ireland’s Governance & Management – a letter from our CEO John Church.

In light of the recent media coverage, it is important as Chief Executive of this great organisation, I share with you the lengths to which we go to ensure we are fully compliant with all legal and regulatory requirements and that we exercise good governance at all times.

You can download our impact report below to see exactly where our money came from in 2015, and exactly where it was spent.

Arthritis Ireland is a limited company with charity status, which means that we are subject to all the rigour and rules imposed by the Companies Registration Office. As a charity, committed to operating to the highest standards of good practice and transparency, we are also happy to confirm that we welcome and are signed-up to the following codes of practice – the Code of Governance for Type C organisations, the Statement of Guiding Principles for Fundraising, the Statement of Recommended Practice for accounting and reporting, the Regulation of Lobbying Act 2015 and the Charities Regulatory Authority.

Arthritis Ireland is governed by a Board of Directors who give their time freely and generously to further the cause. A full list of our Board Directors can be found by clicking here. Arthritis Ireland has a designated Governance sub-committee, who deal with all elements of the audit, finance, and remuneration of employees. Ernst & Young (EY), one of the leading auditors in Ireland, produce a set of annual accounts. Accounts for the last number of years can be found here. http://bit.ly/2a8FtbA

There is more detail regarding our governance and management on our website, along with a detailed 2015 Impact Report outlining our impact in the community which you can access here. You will also find all of our salary information through this page.http://bit.ly/2au8ZrL

Thank you for your on-going support and commitment to Arthritis Ireland. None of what we do could happen without our members, fundraisers, volunteers, staff and board who support the organisation in so many ways.

Together, I look forward to continuing our fight against arthritis in 2016.
John Church
CEO