Thread by @DownArthritis

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/

Most are not able to articulate where/if they have pain & many kids are asymptomatic. Our kids need prompt referrals from GPs & Paediatricians. This is not happening. Often parent’s concerns are dismissed because their child has an intellectual disability. 3/

Research was done about 5 years ago & it found that the incidence was 1 in 50. In comparison to the Neuro typical population which is 1 in 1,000 this is very high. Our children already have so much to deal with, DA is extremely aggressive & must be diagnosed & treated promptly.4/

We really believe that we need a 3rd Rheumatologist to alleviate the pressure on the current consultants. We believe at the very least we need a dedicated Advanced Nurse Practitioner & what we really need is a dedicated consultant who can treat both children & adults with DA. 5/

We are a very unhappy, frustrated group of parents. The research also found that MRI is gold standard for diagnosing Arthritis in our cohort of children. The list for MRI under General Anaesthetic is now so many years long many parents don’t have a date. Most kids need a GA. 6/

So to conclude we need to raise awareness. Our kids are under diagnosed. We want doctors, nurses & physio’s etc around Ireland to be aware of the prevalence of Arthritis in the Down syndrome community. Biting fingers is a common symptom but often put down to a sensory issue. 7/

We want doctors to advocate for our kids. It’s unacceptable. Children cannot wait 4 years on a list. (It’s 2 years to go private). All our children should be seen within 6 weeks of referral, our cohort of children don’t get prioritised because they can’t say how they feel 8/

So if you’re reading this please share and if you’re a doctor please familiarise yourself with the research. We need doctors to listen to parents. Our children & adults with Down syndrome need to be screened for DA annually. Bloods are unreliable so not a good diagnostic tool. 9/

We’re asking for your help @CHIatCrumlin @HSELive @paulreiddublin @DonnellyStephen @OCO_ireland @AnneRabbitte @rodericogorman @LeoVaradkar @MichealMartinTD @EamonRyan @MaryLouMcDonald @alankellylabour @DownSyndromeIRL @Downsyndromecen @ArthritisieYAN @Arthritisie @iCANIreland 10