Screening for Down Syndrome Arthritis
We have heard from many of you about your serious concerns regarding musculoskeletal screening for Down’s Arthritis, and the fact that Dr Charlene Foley is due to complete her PhD research under the clinical supervision of Dr Killeen in the coming months.
We have consulted with clinicians in The National Centre of Paediatrics Rheumatology (NCPR) in Our Lady’s Children’s Hospital, Crumlin (OLCHC) who said: “Given the unique expertise of the National Centre of Paediatrics in this area and our high index of suspicion for this condition, early assessment and appropriate pathways for identifying arthritis are already well established and will remain in place.”
We here in Down Syndrome Ireland will continue to work closely with members and the clinicians at OLCHC in order to continue to raise awareness both at a national and international level.
We will seek a meeting with the Minister for Health Simon Harris to highlight the shortage of Paediatric Rheumatologists and allied health specialists who could facilitate earlier diagnosis and the implementation of therapeutic agents to improve our children’s quality of life and mobility.
In the meantime, we have published the preliminary research findings of Dr Foley’s study, which are available to view HERE. Here, Dr Foley also outlines what symptoms parents and professionals need to look out for if you are concerned about the condition.
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 Pediatrician. 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 in Our Lady’s Children’s Hospital, Crumlin where an appointment for a general clinic will be offered. Down Syndrome Ireland has supported the study both in terms of funding and logistics.
When Dr Killeen, who heads up of the National Centre for Paediatric Rheumatology alongside Dr MacDermott, and Dr Foley approached us about the study four years ago, their aim was to discover whether, like other autoimmune conditions, arthritis is more common in children with Down syndrome.
The research has allowed us not only to answer this question, but raise awareness about this fact amongst health care professionals and the general public, in turn helping to improve the care provided to our children. Thanks to your help, we now know more about the features of the condition and the best treatments to use to achieve the best outcomes.
We have spoken with Dr Foley, who expressed her deep gratitude to all the children and parents who have taken an interest and participated in our study. “It has been an absolute privilege to meet so many wonderful children and families. Research like this would not be possible without the support and contribution of its participants, so thank you.”
We in Down Syndrome Ireland would also like to say a huge thank you to everyone who participated in the study and took part in our screening clinics around the country. The research findings will help ensure that medical professionals are more aware of the prevalence of this condition in children with Down syndrome.
We would also like to thank you for raising awareness with our political leaders about the lack of resources in Paediatric Rheumatology. We will continue to campaign for additional resources for both children and adults with Down syndrome.
As always, we are here to support you in any way we can and if you have any concerns, you can contact our nurse who specialises in Down syndrome on 01 8963785. *We are very conscious of correct terminology, Down’s Arthritis is a clinical term and is not an abbreviation for Down syndrome. *