Cork children waiting up to three years for arthritis diagnosis

Cork children waiting up to three years for arthritis diagnosis

Eithne Hayes, from Rochestown, whose 10-year-old daughter, Tara, has Down syndrome-associated arthritis. Tara was only diagnosed as part of a study. “If it wasn’t for this, we would have had no idea,” said Eithne.

A NUMBER of Cork children are at risk of permanent joint damage because they are waiting as long as three years for a juvenile-arthritis diagnosis.

Chairperson of juvenile-arthritis awareness charity, iCAN, Wendy Costello, highlighted the concerns for parents in Cork whose children are spending years on waiting lists.

Ms Costello said that international health advice recommends that children be seen within six weeks of arthritis symptoms, yet many are waiting years just for a diagnosis.

“The average waiting time for a diagnosis used to be two years, but now this has increased to three years,” she said. “The real danger is that there are different types of arthritis, so it’s difficult to predict just how severe the risks could be. For example, systemic idiopathic arthritis means there is a possibility it might not just affect the joints, but also organs like the liver, lungs, and heart.”

The situation is also frustrating for the consultants treating children with juvenile arthritis.

“Every child, irrespective of what type of juvenile arthritis they have, needs to be seen quickly,” Ms Costello said. “This is extremely frustrating for consultants, because the longer kids have to wait, the stronger the medication they have to endure and more intense their physio will have to be. The fact that children are having to wait this long to be seen is unacceptable.”

Some of the children on waiting lists in Cork suffer from Down syndrome-associated arthritis (DA). It is an aggressive, erosive, inflammatory arthritis affecting one in every 50 children with Down syndrome.

Eithne Hayes, from Rochestown, whose 10-year-old daughter, Tara, suffers from the condition, expressed concern that the illness may be going undetected in many children with Down syndrome.

“Tara was part of a study that was done as part of research,” Ms Hayes said. “If it wasn’t for this, we would have had no idea that she might have it, or that there might be a higher instance in children with Down syndrome. The GP never suspected that this may be the case with Tara, as she is hyper-mobile. We were really surprised to get the diagnosis. Tara only has a few words, so it was hard for her to get across what she was feeling. The only thing that indicated to us that she was in any pain at all was when she would bite her hands. It was only when she was in excruciating pain that she started crying. Sometimes, a child can just be in an irritable mood, so it can be hard to make that connection.”

Despite being in the system, there are still challenges, Ms Hayes said: “Tara is undergoing immuno-suppressive therapy, which means she has to get injections every two weeks. We also need to get bloods done to make sure her immune system is not so suppressed that she wouldn’t be able to fight common infections. When the cyber attack hit, we weren’t able to get bloods done, so we had to get on to Crumlin to see if we could still give her immuno-suppressive therapy. You are always nervous about giving an injection to a child, not knowing how stable their immune system is.”

The mother of three said she feels for children who are on the waiting list, after seeing the physical pain that results from her own daughter’s condition.

“It’s so hard knowing that your child is in pain and that there is something that can be done. When this is the case, it makes it even more difficult to see your child suffering.”

To find out more about the charity iCan, visit their website.

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