08
Nov
2019
Our four year research project found that children with Down syndrome are 18-21 times more likely to suffer from juvenile arthritis than children without Down syndrome.
There is a lack of awareness of the increased risk of arthritis in children with Down syndrome, and this group is potentially at a greater risk of long-term complications. Down’s arthritis needs to be a significantly higher priority for all stakeholders.
You can access the research findings and symptoms parents and the medical community need to look out for on our website here and here.
The research was undertaken at the UCD School of Medicine in partnership with clinicians in Our Lady’s Children’s Hospital, Crumlin and was supported by Down Syndrome Ireland, Arthritis Ireland and the National Children’s Research Centre.
Going forward, we would advocate that all children with Down syndrome have a musculoskeletal examination as part of their annual health review with their GP or Paediatrician. If you are linked in with a physiotherapist, they would be able to assess your child too. Then if concerns are raised, one of the above can refer directly to the National Centre for Paediatric Rheumatology (NCPR) in Our Lady’s Children’s Hospital, Crumlin.
We are working to increase awareness about Down’s arthritis and are seeking increased resources for screening children with Down syndrome for the condition.
We have sought a meeting with the NCPR, with Arthritis Ireland and with iCan, the Irish Children’s Arthritis Network. We will also make this one of our pre-election campaign issues. We had a productive meeting earlier this week with parents and advocates led by Aisling McNiffe at our national office in Ballymount on strategies to improve the situation for our children and for adults with Down syndrome.
Thank you to all the parents who took the time to attend and meet with us as together our voices are stronger.
Want to learn more about Down’s arthritis, the aggressive, erosive, inflammatory arthritis that affects one in 50 children with Down syndrome.
This explanatory video was produced as part of a student project at the UCD Centre for Arthritis Research.
