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Aisling McNiffe #cocooning Profile picture
Aisling McNiffe #cocooning
@McNiffecent
Mum of 2,Carer/passionate advocate,raising awareness of Disability esp severe/profound,Rare disease. #Connolly4Kids! We have a Health Crisis! #HealthFirst
Apr 12, 2021 • 11 tweets • 8 min read
It Arthritis Awareness week~ 12th-18th April. Did you know that Children get Arthritis too? 1 in 1,000 of the Neuro-typical population of young people/ children have arthritis. Did you know that 1 in 50 children with Down syndrome have arthritis? It’s a very aggressive disease. 1 That’s 20 children with Down syndrome for every 1 Neuro typical young person who have arthritis. Many GPs & Paediatricians aren’t aware of the prevalence of Arthritis in people with DS. This means that parents are finding it hard to get a referral to Paediatric Rheumatology. 2
Feb 21, 2021 • 5 tweets • 3 min read
1/ My son requires 24 hr care. He has a severe/profound ID, he is a wheelchair user, he is tube fed around the clock, he requires a huge amt of meds daily, injections, infusions & inhalers/ nebulisers. He requires oxygen at times. He needs me for EVERYTHING. I need the vaccine. 2/ These are his morning meds. There are 3 in the tub on the left. That’s his tube feed. #VaccinateCarers #ForgottenFrontline
Nov 26, 2020 • 6 tweets • 4 min read
@DonnellyStephen @AnneRabbitte @rodericogorman @paulreiddublin I have written to you all about lack of access to Paediatric Rheumatology. I am hoping you will meet with me to discuss. My letter details how children with Down Syndrome have been let down by the health system. 1/ I learned today that the waiting list for a Paediatric Rheumatology appt is now 4 YEARS long not 3 as I said in my letter. It is a year long wait if parents opt to go privately. Most are forced. This is NOT acceptable. @CMRF_Crumlin @DownSyndromeIRL @Arthritisie @iCANIreland 2/
May 15, 2020 • 7 tweets • 4 min read
1/ Dear selfish *******, I see you out jogging, cycling & walking. I am very conscious of the 2 metre rule which is 6 ft for those of you who don’t know. We have been cocooning for weeks on end & I only began to be able to take my extremely vulnerable son out for walks last week. 2/ We haven’t gone out every day because some days are just too busy. I live in the Countryside beside the canal which is lovely. The path at the canal is probably just about 2m wide so even with the best will in the world it is impossible to pass people allowing the 2m distance.