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 www.backtotheschoolyard.ie or call Emma on 01 6470205.

Arthritis-Ireland-BTTSY-FB-Cover

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 www.arthritisireland.ie  To find out more about Team RAD, visit www.racingwithautoimmunedisease.org

11 Tips on Taking Drugs and Medication with Arthritis

Taking medication on a daily or weekly basis is a reality for most people with arthritis to control arthritis pain and inflammation. But with such a wide array of options available, finding the right combinations of treatments that work for you can be tricky.

arthritis treatments

11 Tips on Taking Drugs and Medication with Arthritis

Understanding what each individual type of  arthritis drug does and what side-effects it can cause is no mean feat either. However there are a number of steps you can follow to help ensure you are taking medication safely.

Many people have their own safety checklists that they consult when they discover a new drug or treatment. At Arthritis Ireland, we have drawn up a checklist of our own based on the thoughts and advice of both healthcare professionals and people living with arthritis.

1. Take time to discuss possible side effects of your medication with your doctor – it will help you weigh up the risks and benefits of a treatment.
2. Keep a list of all the drugs you are taking. Let your doctor or pharmacist see this before you start on any new treatment – even ‘over-the-counter’ medicines including vitamins, creams, gels and rubs etc.
3. Some drugs affect your immune system and can leave you prone to infection. So it is important to report any new symptoms to your doctor without delay.
4. Expect to have your blood and urine tested regularly, before and during your treatment. Other tests such as chest X-rays may also be needed.
5. Follow the instructions for taking your medication – keeping to the correct dose and times, and noting whether your tablets are best taken with or without food.
6. Always read the leaflet enclosed with medicines carefully.
7. Some drugs used by people with arthritis can affect fertility in men and women, and be harmful if you are pregnant or breastfeeding. Always check with your doctor first.
8. With some drugs you may need to avoid alcohol or reduce your intake. Ask your doctor for advice.
9. If you miss a dose, don’t try to catch up by taking more next time. Ask your doctor or pharmacist what you should do.
10. Immunisation against flu and pneumonia is recommended for everyone taking immunosuppressants, anti-TNFs and steroid tablets. Immunisations involving live vaccines
such as polio and rubella should be avoided. Ask your doctor for more information.
11. Remember, if one drug doesn’t work for you, or you get severe side effects, this won’t necessarily happen with them all. Ask for regular medication reviews, persevere and work with your doctor to find a treatment that suits you.

For more information on drugs and treatments, including information specific to NSAIDS, DMARDS and Biologics, download the Arthritis Ireland Drugs and Complementary Therapies information booklet.

Our Helpline & the advice it should never give, according to Maeve Binchy

Have you called our Helpline?  Did you know Arthritis Ireland has a Helpline?

Arthritis Ireland advocate Maeve Binchy

Maeve Binchy

Our Helpline was started in 2009 and has gone from strength to strength.  We started with a core group of 10 volunteers and we now have 27 dedicated volunteers. This is a confidential service and all of our volunteers are living with arthritis.  We are proud to have such a wide range of ages on our Helpline – our youngest volunteer is 23 and our oldest is ……70+ and of course all the ages in between!  All our volunteers are living with different types of arthritis and while they do not consider themselves to be experts, they certainly have the experience of living with arthritis and all the challenges that that brings on a daily basis.  Our volunteers are continuously updating themselves on all matters arthritis and keeping themselves informed of any new developments.

So who is our Helpline for?

Our Helpline is for anyone living with arthritis, whether newly diagnosed or living with arthritis for many years.

Perhaps you have read something in the paper which you would like to know more about?

Maybe you are completely up to date with your arthritis but would like some emotional support around living with the condition?

Maybe you are caring for someone with arthritis and would like some support with that?

Perhaps you are looking for information on courses and events being run by Arthritis Ireland in your area?

The late Maeve Binchy was a great advocate of our Helpline.  As part of the Helpline launch in 2009 she wrote about the 10 things you should never say to someone with arthritis.  Here are some of the things she wrote – we guarantee not to use these phrases on the Helpline!

  1. ‘Cheer up, nobody ever died of Arthritis’
  2. ‘It is just a sign of old age, it will come to us all’
  3. ‘A touch of Arthritis’
  4. ‘The walking stick is very aging – I wouldn’t use it if I was you’

Maeve finished her article by saying ‘Don’t ever say, sadly, how tragic it is that nothing has been done for poor arthritis sufferers.  Plenty is being done.  Just contact Arthritis Ireland Helpline.  Then you will have an idea of how much is happening and you can be a true and informed friend rather than a false and frightening one.’

We are here to listen and to help so please give our Helpline a call on locall 1890 252 846.

Fiona Keegan is Arthritis Ireland’s Helpline Coordinator.

10 Tips on Working with Arthritis

Working with Arthritis, Parenting with Arthritis

Young Arthritis Seminars

We have all heard the well-known adage that work is good for your health, but when you have a musculoskeletal disorder, like arthritis, it does not always ring true.

Whether your job is physically demanding or you are sitting at a desk all day, work can have an adverse effect on your joints and posture. Fortunately, there are things you can do to reduce the strain your body is under at work.

Arthritis Ireland is running a number of Young Arthritis Seminars around the country for young people (aged 18-40) living with arthritis, which will focus on the topics of pregnancy and parenting with arthritis and working with arthritis.

The second of a two part series on the new Arthritis Ireland Blog will focus on working with arthritis with 10 key things to keep in mind in the office.

  1. Plan and prioritise tasks, completing most important first. Pacing yourself throughout the day will conserve your energy, reducing pain and fatigue.
  2. Stop before you get tired. Bad habits creep in when a person is tired and not concentrating.
  3. Leave working splints in your drawer and use when needed. They will assist in relieving pain and increasing strength of joints.
  4. Adapt your work station for your individual needs. Using ergonomic keyboards, mouse, chair and desk will reduce strain on your body.
  5. Avoid prolonged standing or sitting positions to minimize muscle stiffness, pain and fatigue. Use a timer on your phone to remind you to change position.
  6. Complete stretching exercises when seating such as ankle rotations, wrist rotations and shoulder rotations, circle the joint in one direction for several seconds, and then change direction
  7. Utilise heat e.g. hot water bottle or ice packs to reduce pain and inflammation.
  8. Discuss options for flexibility in work schedules and tasks with your employer to allow you to plan for changes in function that come with an arthritis flare up e.g. if you find the mornings difficult explore possibility of working flexitime.
  9. Explore the possibility of adapting your role, cutting down on tasks you find most difficult or transferring to a different role within your workplace.
  10. Utilise peer support e.g. discuss matters with your line manager, occupational health specialist and other young people with arthritis through the Young Arthritis Network!

The Young Arthritis Seminars will feature expert speakers, including rheumatologists, clinical nurse specialists, occupational therapists and patients, who will focus on pregnancy and parenting with arthritis (click here to read 10 tips on parenting blog post) and working with arthritis.

The events will take place in:

  • Athlone: Sheraton Hotel, Saturday 19th January, 11am.
  • Dublin: The Gresham Hotel, Sunday 20th January, 11am.
  • Cork: Maldron Hotel, Saturday 2nd February, 11am.

Admission is free. Click here for more information or contact Laura Hickey on (01)6470208 or email lhickey@arthritisireland.ie.

10 Tips on Pregnancy and Parenting with Arthritis

Pregnancy with arthritis

Pregnancy and Parenting with Arthritis

Becoming a parent and raising a family is one of the most rewarding and challenging parts of life and having arthritis should not exclude anyone from experiencing it.

Granted, additional things will have to be taken into consideration but  giving birth with arthritis and raising children is now a very common occurrence.

Arthritis Ireland is running a number of workshops around the country for young people (aged 18-40) living with arthritis, which will focus on the topics of pregnancy and parenting with arthritis and working with arthritis.

The first of a two part series on the new Arthritis Ireland Blog will focus on pregnancy and parenting with arthritis with 10 key things to keep in mind when deciding to start a family.

  1. Medication: It’s important to discuss with your doctor whether you may need to adjust your treatment before you get pregnant. Some drugs such as DMARDs, anti-TNFs, methotrexate, cyclophophamide or leflunomide should not be taken if you are trying to conceive or are planning to breastfeed (for further information see our leaflet on Drugs and Complementary Therapies).
  2. Fit for pregnancy: During pregnancy, some women find that their arthritis remains unchanged or even improves, while others, especially those with osteoarthritis of the hips and knees, may find that it worsens as they gain weight. It is best to try to lose some weight  through exercise and healthy eating before you get pregnant – this will not only help your joints but will make it easier to become pregnant and make for an easier and less complicated pregnancy.
  3. The first trimester (weeks 1 – 13): Many women find the symptoms of their pregnancy to be most pronounced e.g. fatigue, morning sickness, heartburn and dizziness. If it’s all getting too much, remember that you’re not superwoman. Slow down and take some time out from your schedule to look after yourself. If the fatigue is too much for you,
  4. The second trimester (weeks 14 – 27): This is one of the most exciting times of pregnancy – many women share the news of their pregnancy with others, and their bump starts to show. Luckily, some of the more unpleasant symptoms of the first trimester fade and energy levels usually return to normal. In fact, approximately 70% of women with rheumatoid arthritis experience an improvement in arthritis symptoms beginning in the second trimester and lasting until after the baby is born. Unfortunately, arthritis symptoms will usually return once the baby is born.
  5. The third trimester (Weeks 28 – 40): The last 12 weeks often prove to be the most difficult time as the joints and muscles may be affected and problems with weight-bearing joints (hips, knees, ankles and feet) may become worse due to increased weight. Muscle spasms in the back can occur as the uterus grows and the spine curves slightly to support it, leading to pain, numbness and tingling in the legs. Breathing can also become difficult, especially if your arthritis affects your lungs or rib joints and you may experience shortness of breath – if this occurs, you should rest whenever you can.
  6. Delivery: The big day has arrived! Having arthritis does not mean you cannot have a normal labour, and there are many different positions in which you can give birth. If, for example, you have difficulty because you cannot move your legs enough in one position, the midwife will discuss with you some other suitable positions. In some cases, women with arthritis will be advised to deliver their baby by C section, but this is not common. If your arthritis affects your spine, getting an epidural may not be possible. 
  7. After delivery: If you have rheumatoid arthritis you may experience a flare up in the weeks following your pregnancy. Other diseases including scleroderma may become more active after delivery too. If you are on medications that suppress your immune system, it is important that you are extra vigilant for infection as you may be more prone to it than others, but the majority of these infections can be cleared up quickly and easily with antibiotics.
  8. Breastfeeding: If you would like to breastfeed, you should discuss the best medication choices with your doctor as certain medications can interfere with it. Feeding may mean sitting in the same position for a long time on a daily basis so make sure you are comfortable! This may involve using cushions under your elbows, a special support or a small bean bag.
  9. Carrying and lifting: Many parents with arthritis find it easier to lift their baby using their larger joints, like their elbows or forearms. A sling can also be useful in the early stages, before babies become too heavy at around nine months. Other parents use baby carriers or pushchairs.
  10. Equipment: Deciding what equipment is suitable for both you and your child can take a bit of research. Try to choose things that are easy to use. The idea that reputable brands will always be suitable isn’t necessarily reliable as most buggies and high chairs are not designed with parents who have arthritis in mind. Try to choose equipment that is light, well-padded, equipped with wide shoulder and waist straps, easy to fold and unfold and equipped with handles that are comfortable to grip and easily adjustable.

The Young Arthritis Seminars will feature expert speakers, including rheumatologists, clinical nurse specialists, occupational therapists and patients, who will focus on pregnancy and parenting with arthritis and working with arthritis (to be covered on the blog next week).

The events will take place in:

  • Athlone: Sheraton Hotel, Saturday 19th January, 11am.
  • Dublin: The Gresham Hotel, Sunday 20th January, 11am.
  • Cork: Maldron Hotel, Saturday 2nd February, 11am.

Admission is free. Contact Laura Hickey on (01)6470208 or email lhickey@arthritisireland.ie.