The Voice of Arthritis
RA IN FOCUS
RA in Focus is a project that was launched in June 2005, aimed at raising public awareness of rheumatoid arthritis and the associated lack of rheumatology resources.
In July 2005 a national photographic competition was launched to motivate people suffering with this disease to tell their story From the many entries received, a panel of judges chose twelve winners to have their portrait taken by photographer John Minihan to feature in Arthritis Ireland's 2006 calendar and form part of a national exhibition. Since January the exhibition has been touring all over Ireland
John Minihan is an accomplished photo-journalist with a portfolio that includes such famous faces as Princess Diana, Francis Bacon, Andy Warhol, and most notably the legendary Irish poet, Samuel Beckett.
Ireland currently has the lowest number of rheumatologists per head of population in Europe. Each month of the calendar also includes a tear off postcard addressed to Minister of Health, Mary Harney and bearing the message "More Rheumatologists please." The Department of Health has indicated that some 10,000 cards have been received by the Minister to date.
RA in Focus was kindly supported by Abbott Ireland.
RA RESEARCH
 |  Living With Rheumatoid Arthritis:
A patient perspective |
Fiona Casey, Castletownbare, Co. Cork
Age:30
RA for:18 years
Fiona Casey has suffered from rheumatoid arthritis from the age of twelve. Always a lover of horses, Fiona was determined that her desire to ride wouldn’t be hampered by her illness. Because it was uncomfortable to sit astride her horse (in what is the conventional approach to horse riding), Fiona switched to sidesaddle and is seen here competing recently in the RDS Horse Show.
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Tina Waldron, Oughterard, Co Galway
Age:32
RA for:10 years
I have submitted a photograph of my daughter Aoife Jane with my entry, which I took on her christening day on the 12th-July-05. I have three children, two sons and a daughter. Shortly after my first son was born, I was diagnosed with Rheumatoid Arthritis. I never knew before this that Rheumatoid existed. I had heard of Arthritis but thought it was an older person’s disease. I was twenty-one.
Ten years on I know a lot about Rheumatoid Arthritis. I know it can be a bitter and destroying disease that changes your joints from normal looking to completely distorted and abnormal. I know that the pain can haunt you and eat away at every piece of energy your body has.
But I also know that with the help of a great team of medical experts you can have a normal life. These people, and recently developed medicines called ‘anti-TNF therapies’ have helped give me a quality of life I never expected when the pain was excruciating. These people give overall care with no exceptions and have become important in my life. I don’t have pain anymore and my joints are still kinda weak but much better than I ever expected.
When you are diagnosed with Rheumatoid Arthritis you fear for the future, but you shouldn’t. The treatment is good, improving all the time, and the doctors and nurses are professional, caring, kind people who make it possible to have a normal life.
Ten years ago my life changed. It became harder to do things that I always took for granted: dressing myself, walking and driving. Now I take nothing for granted and enjoy life everyday as it comes.
Thank you for taking the time to read this and hope you enjoy my picture of my daughter and I.
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Gerry Monahan, Castleblayney, Co Monaghan
Age:44
RA for:1 years
Since finding out I have Rheumatoid Arthritis there is one boy getting me through my experience. He’s my son Michael and if you look at the photograph that I’ve sent with this submission, called ‘Gone Fishing’, we are both pictured kitted out in fishing gear and holding our fishing rods. He understands when “my hands are sore” and when “I’m not fit to kick football”. So I have taken up fishing with my son and enjoy every minute of it.
I CAN’T LET RHEUMATOID ARTHRITIS DESTROY MY LIFE – I HAVE TO LEARN TO LIVE AND ADAPT TO IT.
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Suzanne Merrigan, Kilworth, Co Cork
Age:41
RA for:32 years
I’ve had RA for the past 32 years. I contracted Still’s Disease around the age of nine. Initially, doctors thought it was influenza but my Mum knew better. I spent my ninth birthday in Crumlin Hospital. My birthday present was RA!
I only knew for a very short time what it was like to be a child. My teenage years were by far the worst. I tried to hide my arthritis as I just wanted to be like everyone else. I was in constant pain and hiding the truth only made things worse.
By my early twenties I accepted it more and started talking about my RA. From there I was better able to manage the condition. Later, I had two hip replacements and discovered I have osteoporosis. On the upside I met a wonderful man and now we have two beautiful children.
I would not be at this stage in my life - which is a good one - without my rheumatologist, my family, my doctors and break-through medical developments. I often prayed for help then along came a different medicine. I now believe I have almost made the full journey across an important bridge in my life.
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Jenny Anderson, Navan, Co Meath
Age:65
RA for: years
Living with arthritis. What is that like? Well, all the things one takes for granted comes to a sudden stop when you get RA. Things like turning on a tap or opening a lid of a jar, to name a few. It has been frustrating and sometimes embarrassing, especially when I had to ask for help to fasten my bra!! It is difficult to describe my constant nagging pain and one wonders why me? But it could be worse. I’m fortunate in that my positive disposition often kicks in and tells me that life still has plenty to offer.
So, with my walking stick in one hand and my determination to the fore, I enrolled with VTOS (Vocational Training Opportunity Scheme) where I completed my Learning Cert with Distinction and then went on to do an Art and Design Portfolio Foundation Course for which I also achieved a distinction. I now paint for pleasure and also have received some commission work. This is wonderful because even though I have painful days, I have found something to take my mind off the pain.
I am a widow of three years and am 65 years young – I know my husband would have been proud of me. There is still life after RA.
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Patrick Brennan, Ballyshannon, Co Donegal
Age:55
RA for:16 years
I am writing to you a few lines about RA, which I suffer from. I was diagnosed as having the condition following a blood test back in 1989 as I was preparing to travel overseas to Lebanon in charge of 35 personnel. Sadly that trip didn’t happen. I served in the Irish Army from 1974 to 1996 when they had to discharge their soldier with RA as he could not put his boots on, or dress himself at that time. I also couldn’t use my hands, or my joints wouldn’t work due to very heavy swelling. I had and lived a fast life. The Defence Forces were good to me in my final few years. But when I lost my job, I also lost my marriage and I haven’t worked since. At present I receive anti-TNF therapy plus anti-inflammatory tablets. I have received wonderful help from my doctors and nurses at all hospital appointments. Even though I have RA, I think I have a fairly good life and really have no complaints. I was receiving my medication when the nurse who was looking after me, gave me a leaflet about this awareness initiative. I will finish up for now as I could write a book about my experiences with RA.
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Barbara Faulkner, Lisasturrin, Co Cavan
Age:41
RA for:26 years
When I was 15 years-of-age I was diagnosed with Rheumatoid Arthritis. I was scared having seen what it had done to my mum in just a few years. She was diagnosed with RA when I was 10. The severe pain and swellings in my shoulder, hands, elbow and wrists was unbearable at times. However, I did not want to burden my mum with how bad I was feeling as my Dad was dying of cancer. This was an extremely difficult time for all the family. Before being diagnosed and just about to face my Inter Cert exam I used take my mum’s painkillers unknown to her. Her debilitating disease was not under control and she had spent several lonely months away from her husband and 7 children in St Josephs Harold’s Cross.
Before being diagnosed sport was my life. I had won gold, silver and bronze medals in National Community Games and silver All-Ireland Schools and bronze All-Ireland Cross-Country. I tried to keep playing sport but was not able to do so and certainly not at the level I had competed previously. People did not understand, as I looked fine. Some just thought I wasn’t good anymore. Slowly I stopped doing what I loved. That was really hard and frustrating. I kept looking at my Mum and thinking that this could be me in a few years. I decided I would keep doing everything I could do as long as I could.
RA has an impact on relationships with family and close friends. So much is reliant on their understanding of RA and its impact and effects on me in my daily life. Their support is absolutely vital. I have educated and informed myself over the years about my disease. To maintain a good quality of life, I must work with my medical team and use their advice and support properly. I have learned to respect my disease.
I don’t play sport anymore but I am the most enthusiastic spectator! It can be very frustrating. I really would love to go for a run or play a ball game. I enjoy all sports – athletics, rugby, GAA, soccer, tennis, and so on. I am always ready to go to a game if I can get a ticket, preferably Premium or Corporate for Croke Park (I wish - Dream on!). I am delighted that the Olympic Games will be in London in 2012. I hope to be at them. As a child I dreamed about competing in them - who knows if my life had been different? There I go, dreaming again!
Since 2003 I am on anti-TNF treatment. I am so grateful for this. I believe that this is why currently my disease is under control. My quality of life with anti-TNF therapy and after surgery has improved greatly. Therefore my promise to keep doing what I can do for as long as I can should be much easier to keep!
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Tara O’Flaherty, Castletroy, Limerick
Age:34
RA for:13 years
I was diagnosed with RA at just 21. It was a bad flare which lasted 6 months and changed and turned my life upside down.
Afterwards, I made the decision to retrain as a beauty therapist. By January 2001, the RA was just a memory and I was running my own beauty salon. Life couldn’t have been better. I had just had my third child. But in March 2001 (the day of the christening) the symptoms such as stiffness, fatigue and pain - oh the pain - came back as if a light switch had been turned on.
I had no choice but to give up the business and sadly my marriage failed. But I don’t take things lying down. I have sent you a picture of me that was carried in my local newspaper on my graduation day. Getting to that day involved shuffling along the corridors and labs in the University of Limerick, juggling caring for the children, the endless housework, the days in court and studying. I didn’t make it to the graduation party as I was too crippled by 3pm on the day.
In Sept 2004, I returned to University of Limerick, studying Industrial Biochemistry but I had to give the course up due to the mother of all flare-ups.
My RA specialist recommended a new type of anti-TNF therapy and thanks to the gifted individuals who were behind its development, I can now jump on the trampoline with my little girls, cycle my son’s BMX, walk on the beach with the one I love and look forward to each and every pain free day.
One day at a time J
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Richard O’Halloran, Liscannor, Co Clare
Age:60
RA for:10 years
Jesus. I was drinking and smoking my whole life beginning at 16-years-old. I worked very hard in the building industry and on my 60 birthday, I had a big party. But when the old RA came to me, I was struggling very hard.
I have always had good friends. They visited me in the hospital and when I was back at home, they brought me the dinner and got me up for a walk on the sea. In return, I was babysitting or gave advice to how to renovate old houses. I never gave up doing things despite a lot a pain.
I’m going busking to the Cliffs of Moher with my dog if the weather is nice. I’m playing the one-row-melodeon with my crippled hands.
You can talk to the people there from all over the world. Many photos and videos have been made of me. In the wintertime, I’m flying to Thailand with friends. It is very cheap out there and the weather is very warm. Then I haven’t so much pain and I’m well able to walk.
I can’t do much anymore but I still can give some support and company and advice to my friends.
Life goes on and I’m enjoying it.
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Marcia Gunn, Baldoyle, Co Dublin
Age:38
RA for:21 years
The most wonderful experience of my life was on 18th September 2003 when my miracle baby Aoife was born! My Rheumatologists had worked closely with my GP and doctors in my maternity hospital for two years until that very special day arrived. Thanks to the advice and assistance of the midwives, and the help of a different type of anti-TNF therapy, I was able to fulfil my dreams of caring for her myself. Bathing, dressing, nappy changing, rock-a-tots, buggy’s up and down and “clicks” for everything from car seats to buggys and high chairs. There is lots of walking the floors at night, running after Aoife, jumping up and down on bouncy castles, playgrounds, in the park, pushing Aoife on her bike on the beach – and that is some pushing, mother and toddler groups – three per week and squatting on the floor which I couldn’t do for twelve years, shopping centres, Temple Street Hospital, baby changing areas. I guess you get the picture.
Before my new medication and Aoife my life was full of PAIN. I had a limited social life. I had to leave work and I was constantly trying to keep up. I was not in the real world.
Now I feel I’ve woken up – I just inject myself and go. Thank you to all the medics who helped me. Thank you for my new medicine. And thank you God for my miracle child. For everything else there is Access (the credit card)!
Must dash, I have a life to get on with and it’s hectic!!
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Anna Nolan, Dundalk, Co Louth
Age:22
RA for:20 years
My name is Anna Nolan, I just turned 22-years-old and I have Juvenile Idiopathic Arthritis (JIA) which is also known as Rheumatoid Arthritis. The reason its called “JIA” is because you develop it when you are under 16 but in my case, I was diagnosed it when I was just two-years-old. Unsurprisingly, my parents say I was a crier as a baby, never wanted to walk, always wanted to be carried J, so I may have been born with it, we just don’t know.
It’s very tough growing up with arthritis as a kid not been able to participate in a lot of activities, but with the help of family, friends and great schools, I did just fine and had a wonderful childhood J
Let’s skip all the in-between stuff and I’ll bring you up-to-date. When you have arthritis, you go through up’s and down’s - the “downs” being called flare-ups. And at the moment I’m going through one. I haven’t had one since back in 1999, when I was 16. It’s so painful, sleepless nights, not able to walk, carry, hold or lift things and excruciating pain in all the joints (in my case I have it in EVERY point/ place/ joint in my body, so I’m affected by arthritis everywhere).
So my flare-up this time started when I was in America last year (I had been there since February 2004) and my arthritis started to get painful around November and then the high temperatures started coming. I had planned to come home for Christmas to visit and go back in January to start college later that month but when I did come home (Dundalk) my arthritis got worse and after a few visits to my specialist in Dublin, he advised me not to go back to America just yet. I took him up on his advice as I was starting to feel worse and my ESR was sky high. I was a bit upset about not going back to California and starting college but I knew I could defer my place till September. Towards the end of January 2005, I was taken into Harold’s Cross in Dublin for two weeks to try a different medication. It’s an injection I give myself every week. I’m currently still on it. Although I think it’s taken its time to work, my ESR has gone WAY down. I’m still on all my other medications too.
Right now I’m unable to work or anything like that until I can get my body back to strength. But just because I was unable to start college last January, it didn’t stop me from doing a home study course from the National Communications College, which I am currently still working on. But I’m still going to fulfil my dream and go back to California and start college over there. I’ve already been acceptedJ. I’m going to do a social work course and go into the medical end of it, and hopefully one day counsel kids with Arthritis, as I’ve been there and I’m still there and understand it all.
The photo I’ve enclosed is of me on a scooter that I recently bought so I could get around, as I’m unable to walk far. It’s been great. I’m able to keep up with people J now. No matter what age you are, scooters are always fun. It really has helped me get around to and from places that are so close but yet for me are far to walk to. I also have terrific family and friends who understand my disability and accept me for me.
I love my life - the arthritis is just part of it and I’ve grown to accept it. I’m a very happy person no matter what type of pain I’m going through, I know God has helped me through it all.
A scripture I’ve had with me FOREVER, that my mom use to always say to me growing up; its from Philippians 4:13: “I can do all things through Christ who strengthens me.”
And it’s true, if I want to do something, I won’t let my arthritis hold me back because I know God will help me through anything. He will give me strength J.
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Anna Marie Healy, Belmullet, Co Mayo
Age:36
RA for:28 years
I am Anna Marie’s partner Pat and from the outset, I want to state that I hope this description of Anna Marie and her arthritis gets the message across that life goes on everyday. Her arthritis is only part of the full story of her life.
I believe that Anna Marie is one of the most worthy people that could be entered for your competition and awareness programme as she has had Rheumatoid Arthritis since the age of eight and is now thirty-six-years-old. As well as that, Anna Marie is in a constant, very high level of pain. Most of the time she needs to use a wheelchair as she has poor mobility. Despite this, she is very involved in life and participates in a huge amount of activity in her community, in disability awareness and independent living. It is just unbelievable. She is also somebody who is willing to participate in swimming and other outdoor activities such as sitting in the sun, which she says helps her arthritis. And by doing this, Anna Marie is not afraid of what people think of the several scars she has from the several operations. I regard it a very brave thing to do, to be able to be so open about your body image, particularly for a woman and of this age. I also regard this as a great encouragement to other women to participate in sport or activity because body image is so much concentrated upon in the media as well as elsewhere these days.
Allow me to outline just a few of the activities that Anna Marie Healy has participated in. She has been involved with several educational programmes in disability organisations of which she is a member. They include the Irish Wheelchair Association, the Mayo Centre for Independent Living, the People with Disabilities in Ireland organisation, a Social Housing Group in her native Belmullet and the Mayo Rural Transport group. Anna Marie is at present and has been at various stages, a director or held officer positions in all of these organisations.
Travelling to these meetings is a huge task for a person with disability like Anna Marie as Belmullet is a very isolated area in North Mayo, forty miles from the nearest town and has no assessable public transport. It is regular practice for Anna Marie to be lifted and assisted on and off buses with several steps as this is her only means of transport to get to her meetings and destinations but this young woman is adamant and determent that she will get there.
Anna Marie has been in a relationship for seven years, she is big into socialising and meeting people. In fact she has a personality that draws people to her and she never stops smiling in spite of huge level of pain and struggle in her life, due to her disability.
Most recently, in September 2005, Anne Marie went to the European parliament in Strasbourg as part of a four day European project to highlight the need for greater Independent living Services. She never stops and she sets the rest of us a brilliant example.
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