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Thursday, October 22, 2009

Niamh Costello's Story

Thursday October 22nd

Niamh jumped out of bed looking forward to her week ahead as you can guess Niamh in great form..What a great feeling to have when Niamh comes into our bedroom smiling.. She has done her physio routine put on her muscle rub and is ready for breakfast and her medication. When she comes in from school we go for a swim and Niamh just loves it..

Niamh in great from she goes swimming with her school and tells me she was in a relay race and loved it..I later get a phonecall from another child's mother to tell me Niamh was upset at swimming today as the team she was picked to be in complained they didn't want Niamh on their team as Niamh had arthritis and would slow them down.. I am really mad but I decide not to say anything to Niamh she has had a course of counselling to deal with any negative feelings so I feel it best I leave her to stand up for herself she is 10 and will come up against children who don't understand again and agian..

Niamh doin great today and goes into school to see an article she did for irish exaiminer posted up in all school rooms.. The principal had organised it.I get a phonecall from another parent woth arthritis having a tough time at the moment and we share our worries..

I was on local radio a few weeks back talking about arthritis and I get a phonecall from a guy selling a product called juice plus. he says it will help to boost immune system.. I come offf the call and have a good cry I find it upsetting to read and hear of all these cures!!! I know they work for some people but I have tries a hell of a lot of things and nothing as good as the Meth. yet.. The reason I feel upset is the fact I feel I have to try these things... I owe it to Niamh to try...Niamh heading to her physio today she looking forward to it because she will be able to push herself today as she pain free...

Monday, October 12, 2009

Kids with Arthritis Deserve Better

Young people with arthritis decided that enough was enough and are joining forces with Arthritis Ireland to campaign for improved paediatric rheumatology services. Launching Kids With Arthritis Deserve Better during National Arthritis Week, they are calling on people to visit to sign their petition demanding the immediate appointment of a second paediatric rheumatologist.

There is currently only one paediatric rheumatologist for the 1,000 children in Ireland living with arthritis, who also has a commitment to general paediatrics. As a result, children with arthritis are being forced to endure chronic pain, risk deformity and muscle wastage as they wait up to 13 months for an appointment with her. This is in sharp contrast to the international best practice recommendations that children with arthritis should be seen within 6 weeks of onset of symptoms.

Breffni Molloy speaks about how limited access to rheumatology services impact's on his life...

My name is Breffni Molloy. I was diagnosed with Juvenile Arthritis at the age of 13 during my first year in secondary school. As I live in Co. Galway, I was referred to an adult rheumatologist and she referred me to Dr. Killeen to make the final diagnosis of juvenile idiopathic arthritis.

At this stage, the arthritis had spread from my foot to my wrists, elbows, shoulders and knees. I was in a lot of pain and found it very difficult to do normal things like getting up in the morning, which could take up to an hour. I found it very painful to walk and spent nearly all the time in bed or lying on the couch during the day. I missed seeing my friends every day as I wasn’t well enough to go back to school for the rest of first year.

I have been on methotrexate for the last 2 and a half years, and have to have monthly blood tests done to make sure this drug doesn’t damage my live.

I had my last flare up before my junior cert this year and was started on steroids by my GP because I couldn’t get an appointment with Dr. Killeen before my exams. When I finally got to see her I had to return a few weeks later to the day ward in Crumlin to have my knees aspirated and injected with steroids. I find these three to four hour journeys to Dublin very tiring.

We desperately need more consultant paediatric rheumatologist in the country so that young people can be seen on time and receive the right treatment. For too long the voices of young people have been ignored, so I’m asking you please to listen to us now and do the right thing.

Please visit and sign the petition for the appointment of a paediatric rheumatologist now! Your support will make a difference

Friday, October 2, 2009

How to look ahead all the time whilst living with Rheumatoid Arthritis

When Mary Whelan woke up and couldn’t move her hands, she suspected arthritis. Eight years on, arthritis is a part of her life, but it’s not running it.

Mary Whelan (45) went from running marathons and doing step-aerobics to being helped by husband John to wash her hair and get out of a chair. In 2000, she became will with Rheumatoid Arthritis but, today, she’s back in control of her own life.

“For the first four years, I was very sick, and totally dependant on my husband”, said Mary, mother of four children, William (21), Roisin (20), Niamh (11) and baby Suzanne, who died shortly after birth in 1985. “I had RA all over my body”, she said adding that it took time before she was prescribed an anti-TNF therapy. “Within two weeks of that, I was walking around with very little pain. I still have pain and I wouldn’t be able to pound the roads like I did during the marathons as some of my joints are eroded.”

But through it all – the visits to her GP, the visits to the Rheumatology clinic in St Vincent’s University Hospital, Dublin, the visits to the Rheumatology Rehab Clinic at Our Lady’s Hospice, Harold’s Cross, she remained positive. ”The thing about the medication is that it takes so long to find the right one for you”, said Mary, who lives in Arklow, Co. Wicklow. “It takes up to three months to see the effect of the medication, then the dose is upped and that takes another three months to judge, but in the meantime, you’re getting worse. But, at the same time, I can’t stress enough that there’s life at the end of the tunnel and I always tell people not to give up in the search for the right medication for them”.

Whilst Mary had to give up work after she got RA, her love of art has persisted, and she maintained that interest and her involvement with an art group throughout her arthritis. Today, she designs and makes personalised cards, has published a children’s poetry book and paints watercolours and acrylics of landscapes, seascapes and still life, a far cry from the day in 2000 when she woke up and couldn’t move her hands.

“At my worst, I kept going. When I was taking Niamh to school, I would get up half an hour earlier than usual just to give myself time to get going. Then, we’d set off for school half an hour earlier to give up time. I felt I had to keep going because I had the children. I also felt that I could either sink or swim with the arthritis. I used to say to myself that I could either sit there in solid pain and not move and have everyone waiting on me, or I could get up and get moving and lost some of the stiffness in a few hours.

“At the same time, you have to respect your joints. I always make sure that I take all my medications. You have to follow your rheumatologist’s advice, keep your weight down and exercise. I lost a stone-and-a half and it definitely benefits the joints in my feet and hips. And I go to aqua aerobics so I get all the benefits of exercise without feeling all the work!”

Oh, and she keeps busy, fundraising for Arthritis Ireland, the Jack and Jill Foundation and local charities!

This article was taken from Arthritis Life, Winter 2008. To subscribe to Arthritis Life, click here