Advocacy group for children & adults w/ Down Syndrome Associated Arthritis. 1 in 50 kids with DS have Arthritis. Currently 4 year waiting list for Paeds Rheum.
Jun 7, 2021 • 5 tweets • 5 min read
1/ Appointments are still being cancelled due to the cyber attack & parents of children with Down syndrome associated arthritis are very concerned. The public waiting list for Paediatric Rheumatology is 4 years long! It was 3 pre-Covid. There are only 2 Paediatric Rheumatologists
2/ We should have at the very minimum 6 for our population. A third Paediatric Rheumatologist has very recently been appointed but is not due to start until some time in 2022 due to personal commitments. So our waiting lists won’t ease. This cyber attack is increasing the lists!
Apr 16, 2021 • 11 tweets • 6 min read
It’s Arthritis Awareness week. Did you know that 1 in 50 children with Down syndrome have Arthritis? There is currently a 4 yr public waiting list for Paediatric Rheumatology. It was 3 before the pandemic so a long time in crisis. We only have 2 Paed Rheumatologists in Ireland.1/
We are a support/ advocacy group set up 2 yrs ago but only now on Twitter. We have 220 members. We are all parents of children/ adults with Down syndrome associated Arthritis or suspected DA. Many are languishing on the waiting list. Many of our kids are non verbal. 2/
