Long Covid Kids - #LongCovidKids Profile picture
Apr 1, 2022 9 tweets 14 min read Read on X
Jacob is 11 years old & has been unwell since March 21. 2 weeks after #covid19 infection he lost mobility in his legs & required mobility aids alongside physiotherapy twice a wk ever since.

Jacob wants more support for families living with #LongCovidKids

#ShineALightOnLongCovid
Emily is 9yrs old, she contracted Covid in Sep21. She was admitted to hospital for 13dys in Nov due to severity of her #LongCovidKids symptoms.She now uses a walker as has severe pain in her back & legs.

Emily would like more funding for LC services

#ShineALightOnLongCovid
Anna is 9yrs old & has had #LongCovidKids for 2yrs.
She uses a wheelchair as has severe pain in her legs when she tries to walk. She feels people are pretending Covid is gone.

Anna is asking the PM and Scottish government to help children like her.

#ShineALightOnLongCovid
Jasmine is 11 yrs old & has had #LongCovidKids since Jan21.
She misses dance, gymnastics & karate.Jasmine uses a wheelchair as she can't walk long distance.
Jasmine is asking for schools to be made safer for children so that Covid transmission is reduced
#ShineALightOnLongCovid
Liliana is 17yrs old. she's been living with #LongCovid since Sep 2020. Liliana's concerned about the way that children & parents are being treated by some doctors who don't understand LC/don't believe it effects children.
She asks that the PM listen!

#ShineALightOnLongCovid
Kitty,16yrs old, had Covid in March 2020. She improved after a few wks but after another month developed #LongCovid. For 5 mths she required help to eat & drink & to use the bathroom. LC has taken a huge toll on her mental health. She is calling on the PM to make tests free again
Eva (Aged 14) has #LongCovidKids following asymptomatic infection. She's concerned that some doctors don't understand & are telling children that they are just anxious or depressed. Eva is calling for more research to find the cause of LC and treatments.
#ShineALightOnLongCovid
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More from @LongCovidKids

Sep 6
🧵 Module 8 Prelim Hearing @covidinquiryuk @LongCovidKids @LCKScotland
CYP with #LongCovid suffered the double burden of the direct effect of their illness and disability as well as the indirect effects of the pandemic & it's associated measures felt by all CYP
Sarah Hannett KC
Some CYP have lost their lives to COVID-19, many continue to suffer from the life changing, disabling symptoms of #LongCovid

Patients & their families suffer the additional burden & stigma of being disbelieved and disparaged or having symptoms minimised or dismissed as anxiety
We agree with the observations made by the CRO that the Pandemic, & we would add #LongCovid, exacerbated and continues to worsen existing inequalities amongst CYP in terms of, for example social economic status, ethnicity & disability
#LongCovidKids
Read 17 tweets
Dec 13, 2023
Listen to Long Covid Groups closing submission delivered by KC Anthony Metzer. 12/12/23
My Lady, I appear with Sangeetha Ienger and Shanthi Sivakumaran
Instructed by Jane Ryan of Bhatt Murphy
@Jane_Ryan_ @BhattMurphy @covidinquiryuk
#LongCovid #LongCovidKids #CovidInquiry
You heard from our client @SammieFMc during the impact films. In her statement, she said: “it has been extremely distressing to watch my child who had been previously completely healthy, happy and dancing around being unable to move and full of self-doubt. It was like watching
my child fade away – she is no longer the child she was.”

The LCG's have sought to understand how & why there was an inexplicable delay in the @GOVUK recognition of #LongCovid, when longer-term sequelae were foreseeable/ well-established from SARS and MERS.
#LongCovidKids
Read 13 tweets
Oct 31, 2023
Three years ago while #LongCovid was being denied and ignored, despite available evidence @LongCovidKids families came together to make this made this awareness video advocating for CYP injured by #COVID.
3 years on, children are still sick.
#LongCovidRuinsLives #LongCovidKids
Listening to the witnesses at the @covidinquiryuk today has been extremely difficult, upsetting and traumatic for families.
We are distraught that the experiences of our children who both endured the pandemic and were injured by the virus, are not being heard. The inquiry
'listening' project WILL NOT hear directly from CYP with #LongCovid. Less than 20 children will be interviewed as part of a research project. Their experiences will analysed and shared alongside the experiences of a larger number of children who endured the pandemic. We feel
Read 6 tweets
Oct 10, 2023
1/3 These are the words children use to describe their #LongCovid experience.
Friday is #LongCovid day at @covidinquiryuk
@LongCovidSOS Co-founder @selkieO
will give evidence on behalf of the Long Covid Groups.

We can't do this alone, we need your support.
#StrongerTogether Image
2/3 Their words remind us why we are part of the @covidinquiryuk
Join Us.
✅0915> @ Dorland House, 121 Westbourne Terrace London, W2 6BU
✅0800> online to support as we ask the @covidinquiryuk to #listen, #learn & give children & families #Hope

#ListenLearnHope
#GiveUsHope Image
3/3 The words of the young people injured by #COVID keep us focused on why we are part of the @covidinquiryuk

#Hidden
#Lost
#Broken
#Forgotten
#Disabled
#Stuck
#Trapped
#LeftBehind
#Ignored

#LongCovidKids #LongCovid #LongCovidAwareness Image
Read 4 tweets
Jul 29, 2023
“These figures are extremely concerning. Children rarely get ill, so a disease affecting 2% of young children to a level that it’s causing restriction of day-to-day activity is a huge public health problem.”
@dgurdasani1

#LongCovidKids https://t.co/xFg2We5iwa
Image
“In the absence of vaccination, prior infection remains the only means by which children can, ironically, become immune, and evidence shows that ensuing protection is highly variable and often insufficient….

#LongCovidKids


#LongCovidKids https://t.co/4jUPn3lTAvinews.co.uk/news/science/t…
Image
…This, combined with low vaccine rates & a lack of mitigations, condemns kids to multiple reinfections that may lead to both #LongCovd & other forms of morbidity, as well as a proportion experiencing severe acute disease on breakthrough, w some sadly succumbing.” @SGriffin_Lab
Read 5 tweets
May 29, 2023
🧵 “We now need to explore whether the lack of implementation is due to a lack of commissioning of services, or whether it represents centres choosing not to follow the guidance & use alternative strategies without evidence base.” @DocStrain

#MECFS #NHS
thetimes.co.uk/article/thousa… Image
“It is important that decisive action is taken to address these issues and ensure that #MECFS patients receive the appropriate care they deserve,
@SonyaChowdhury
@actionforme

#PostViralIllness #Disability #Health Image
With > 2 million people living with Long Covid, and > 50% said to meet the criteria for #MECFS and therefore @NICEComms guidelines communities must stand together to ensure safe rehabilitation & care.

The full article can be seen here.
Thanks @ABrokenBattery

#LongCovidKids
Read 6 tweets

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