A Dublin mother, Una Ennis, is pleading with the HSE to approve the drug Givinostat, which her nine-year-old son Archie needs to prevent the progression of Duchenne muscular dystrophy and keep him out of a wheelchair. Although the family successfully secured €3.2m gene therapy through a US clinical trial, she fears his progress will be lost without access to this daily medication, which is currently being reviewed for cost-effectiveness by health officials.
#ArchieEnnis #DuchenneMuscularDystrophy
#Givinostat #FundTheMedication
https://t.co/vfkH89SC2q
Ok.
I've read "The Painful Truth About Long Covid" six times through, and I'm ready.
Here are ten clues in the article that point to the writer's bad faith.
I can’t tell you how traumatizing it has been to see ppl making jokes, rolling their eyes&straight denial of a condition that took away any chance of me going to Graduate School for music education.
25 years of classical training gone.
And ppl still pretend you can will it away.
@tylerblack32 It’s pretty hard to be a psychiatrist with long Covid - well now recovered!
I don’t think long Covid sufferers are anti psychiatry per se - they’re just reacting appropriately to psychiatry exerting an influence in an area where it’s not appropriate.
“Passive transfer of IgG from individuals with LC into mice induced fatigue-like behavior, loss of balance/coordination, thermal hyperalgesia, small fiber nerve damage, and increased pain-related neuronal activity, recapitulating patients’ symptoms.”
Emily is a wonderful person and her family are worried sick about her.
Please can I ask you to share.
#pwME & #LongCovid ppl can you please help spread the word.
A close family member of Emily's is part of our community.
#MissingPersonAlert#MissingJuvenile#Ireland#Irish
@laoisedebrun@IrishTimes Many people developed Long Covid after Covid infection. Many people were also vaccine injured. Both groups knowledge each other. Why do you not do the same?
@indepdubnrth Millions worldwide developed Long Covid in 2020 long before any vaccines became available. You help neither group (Long Covid or vaccine injured) by refusing to recognise that.
@Gael_Force_ @IrishTimes Developed Long Covid after Covid infection in March 2020, long before vaccines existed. Who are you helping shouting ‘long covid is vaccine injury’?
@Jklunden@IrishTimes Unless Covid can time travel, my Long Covid is from the Covid infection I had in March 2020. It’s lazy and disrespectful to blindly shout ‘it’s the shots’ at every mention of Long Covid. You’re not helping anyone!
Tracey Dowling from Ireland 🇮🇪 a HCA who contracted #Covid19 has also had her life dramatically shaped by #LongCovid
In the EU #Covid injury is recognised within the workplace.
In Ireland and UK 🇬🇧it is not recognised or compensated like HIV, or Hepatitis C
This must change!
@MiriamOCal@CareChampions2@rtenews Thank you @MiriamOCal for highlighting our https://t.co/uu4rNrMaGM life has been destroyed.I honestly cannot believe how flippantly our government have abandoned us.
When the next pandemic hits,I would advise all HCWs to stay home and look after themselves.Nobody else will.
If you know someone with long Covid, checking in with them and listening can be one of the kindest things you can do.
I loved Deborah’s post, and it shows how much that can mean to someone.
Just do it!
Former Surgical Nurse suffers with #longcovid which has prevented her from living her life, having children, and leading a fulfilling life. One infection is all it takes.
You could be next!
#covid19#wellbeing#nurse#lifelessons
🚨 Using healthcare workers as disposable human shields, does nothing to promote staff retention.
"They were our heroes. We applauded them and we should now not abandon them" - Phil Ní Sheaghadha
@INMO_IRL#LongCOVID