11
Dec
2019
Down Syndrome Associated Arthritis (DA) affects one in 50 children with Down syndrome according to research undertaken by clinicians at the National Centre for Paediatric Rheumatology (NCPR), CHI Crumlin in partnership with UCD School of Medicine and the National Children’s Research Centre. The research was funded in part by Down Syndrome Ireland and Arthritis Ireland through the UCD Newman Fellowship programme.
The three organisations came together following another productive meeting with parents and advocates led by parent Aisling McNiffe at DSI’s national office in Ballymount on strategies to raise awareness about Down Syndrome Associated Arthritis (DA). We would like to thank the parents for taking the time to attend and meet with us.
You can access the research findings as well as the symptoms parents and the medical community need to look out for on our website here and here.
We will also meet with the National Centre for Paediatric Rheumatology (NCPR) in Our Lady’s Children’s Hospital, Crumlin. This explanatory video was produced as part of a student project at the UCD Centre for Arthritis Research:
We would advocate that all children with Down syndrome have a musculoskeletal examination as part of their health review with their GP or Paediatrician. If you are linked in with a physiotherapist, they would be a health professional that may be able to assess your child or advise you also. If clinical concerns are raised, a referral directly to the National Centre for Paediatric Rheumatology (NCPR) in Children’s Health Ireland, Crumlin (previously known as Our Lady’s Children’s Hospital) is advised.
Over the last few weeks, we have received some calls and emails from concerned parents about the long waiting lists for assessment and follow up appointments for Down Syndrome Associated Arthritis (DA).
A third Consultant Paediatric Rheumatology post was advertised at Children’s Hospital Ireland at Crumlin in October. New members of a multidisciplinary team in paediatric rheumatology (including registrar, physiotherapist, advance nurse practitioner, clinical nurse specialist, occupational therapist) have also been recruited. This expansion in capacity at Crumlin is expected to help address the current waiting list situation. This is a result of years of lobbying from a number of sources who are fighting to improve the situation.
Thank you to all of the parents, groups and organisations who have worked tirelessly to highlight the issue and lobby for change – together our voices are stronger.
We will keep you updated on our progress.
