DEIRDRE O’Leary, whose daughter, Rebecca, aged 15, has juvenile arthritis, says that in some ways, it’s like having “an invisible disease”.
While Rebecca, a junior cert student at Christ King Secondary School, who lives in Ballinlough, had to use a wheelchair for a while, she is now back walking and even attends a weekly dance class. However, she had to give up gymnastics.
“If you looked at Rebecca two years ago (when she got her diagnosis), you would think the poor child was wasting away. Now, looking at her, you wouldn’t know there’s anything wrong with her. That’s the hard part.”
Rebecca has been through the mill. She was diagnosed with juvenile arthritis in July, 2015. “It came on very fast. She got extremely ill and was admitted to hospital and then transferred by ambulance to Our Lady’s Hospital, Crumlin.
“It started with something very small — a swollen ankle. It was thought she had injured it at gymnastics. But it wasn’t going away. Something showed up in a second x-ray which led doctors to believe there was something sinister going on. They did some investigations. Her bloods were through the roof. She had lost 10kg in a couple of weeks.”
Juvenile arthritis is an autoimmune disease that affects at least 1,200 children in Ireland, according to Arthritis Ireland. There is a care centre at the Crumlin hospital for children up to the age of 16. Rebecca spent a lot of time there after she became seriously ill.
“Rebecca’s immune system started attacking all the healthy cells. In her case, her toes, feet, ankles, knees, hips, shoulders and the base of her spine were affected. It also started affecting her organs. It’s a chronic long term illness. There’s no cure for it. The treatment is severe and aggressive. Rebecca is on Methotrexate, a chemo-type drug. She’s also on a biologic which is injected. And she’s on steroids and anti-inflammatories.”
Rebecca was on a feeding tube for a while because she had lost so much weight.
In order to get an official diagnosis, everything else had to be ruled out with tests done in the oncology department, cardiology and immunology.
After being in a wheelchair, Rebecca was on crutches for about a year.
“She literally could do nothing,” said Deirdre, who is grateful for the support Rebecca receives from ICAN (Irish Children’s Arthritis Network).
There are only two paediatric rheumatologists in Ireland.
“It’s appalling. If you go to somewhere like Holland, the treatment that the children get there is unbelievable. Ireland is something like the second worst country in Europe for the number of paediatric rheumatologists. ICAN is trying to push for more. These children need to be seen quickly or they’ll end up with a long term disability. It’s awful to say this, but the sicker you are, the quicker you’ll be seen.
“Some of the children with juvenile arthritis are just left there. It could be two years before they’re seen. By the time they are seen, the damage is done. It’s very serious for children. Their bones are growing.”
For Rebecca, her diagnosis and illness has been a huge emotional rollercoaster.
“She was, and still is, I suppose, very much in denial. She doesn’t like anybody talking about her condition. That’s where ICAN comes in. We find them superb. She has met all the kids with the same thing as her. They all get it,” said Deirdre.
Rebecca has regained the weight she lost. “Some days she can look very healthy. But the fatigue is a big issue. However, her school has been a massive support. I can’t thank them enough. Mrs Watkins has been superb. That’s one thing we don’t have to worry about. I know that sometimes, schools are difficult to get on board with a condition like this. But from the day Rebecca started in first year, she got every resource she needed. If she needed to drop a subject, that was fine. The school facilitates every kind of need, such as use of the lift, without making it too obvious.”
Studying can be difficult for Rebecca.
Deirdre explained: “She finds it hard to focus. Sometimes, she’s just so exhausted that she can’t focus at all. If she’s in pain, she is absolutely distracted. We have some home tuition coming in because Rebecca has missed a lot of school.”
At the moment, Rebecca’s pain is being managed by medication.
“If she misses a dose, straight away she’s in pain. The aim is to get her into medical remission. If that happens for 18 months without any flares or active arthritis, we can look at starting to reduce her medication. That’s what we’re aiming for.”
Deirdre says there is a lot of ignorance about juvenile arthritis.
“People go, ‘Oh, my granny has arthritis in her leg.’ You have to explain that it’s not the same thing. It’s a completely different ball game. Rebecca sometimes thinks it’s just so unfair. She wonders why she gets everything. She had to have her tonsils out in April. Everything is affected. Her eyesight is affected. She’s up to ophthalmology at CUH every few months to be checked for eye damage.”
As well as physiotherapy and occupational therapy, Rebecca has to regularly see her rheumatologist and clinical nurses. She has to have her bloods tested every month.
“The psychological part of it is important. ICAN doesn’t have the resources for psychological support but they welcome people with the condition. They realise that what works for one child doesn’t necessarily work for another child.”
Despite the awful disease, Rebecca “is doing great, going to her dance class for an hour every week. I always say to her that she knows her limitations. She works out what she can do. She realises that if she does something today, tomorrow she is going to be floored and will have to rest up.”
Rebecca doesn’t go to discos.
“She can get very panicked. Anxiety is a big thing with her. She goes to town alright. She went there a couple of weeks ago with a friend. She was only in there for an hour when she rang to say she’d have to be collected and taken home. Another day she could go in and it will all be fine.”
Rebecca’s father has ankylosing spondylitis which is a type of arthritis that affects the spine.
“The doctors say there are no links to say that what Rebecca has is genetic. But rheumatoid arthritis is huge in my family and in Rebecca’s dad’s family.”
Deirdre says it’s high time that Juvenile arthritis was recognised for how serious it is.
“I’m not sure how much influence the HSE has, but at the end of the day, the buck stops with the health minister. It would be great if he sat up and took notice. We have written to the health minister. ICAN does a lot of lobbying. The chairperson, Wendy Costello, is amazing.
“What we really need are more paediatric rheumatologists. And we need them to be localised. This business of children travelling to Dublin is just ridiculous. If we could set up clinics around Munster, it would be great. Every parent just wants their child to be happy.”
For more information about ICAN see www.icanireland.ie.
Earlier this week Deirdre organised a Zumbathon for ICAN (Irish Childrens Arthritis Network) in Douglas GAA. Deirdre thanked Mariusz and Madga Rys (Zumbacork.ie) for their support in organising the event.