Long Covid Kids - #LongCovidKids Profile picture
Sep 3, 2021 15 tweets 16 min read Read on X
1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.

#AlwaysOurBabies #LongCovidKids #BacktoSchool2021 Image
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies Image
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies Image
4) This is Lilyana she’s now 11 and not a day goes by she isn’t in pain. I miss her laughter, her goofiness, and most of her happiness. Please protect your children. #longcovidkids #AlwaysOurBabies

#longcovid #BacktoSchool2021 Image
5) This is Emma, now 14 years old. Emma has always been very healthy and strong. 16 months ago she sadly lost her health to #LongCovid, but during this time she has been stronger than ever! She is our hero and we are immensely proud of her ❤️
#AlwaysOurBabies #longcovidkids Image
6) Meet Martha at 2 wks. She is now 12 & sees several different specialists, has a modified school schedule & uses mobility aids as a result of #longcovid. Protecting our most vulnerable should not be a hard decision. Get #vaccinated, #maskup, keep our kids safe! #AlwaysOurBabies Image
7) Meet Cay. She is now 11. B4 #Covid she had abounding energy & a spunky personality.
She got #Covid April 2020 & has now been diagnosed with Covid triggered Juvenile #Fibromyalgia & doesn't go through a day without pain. We miss her energy.#longcovidkids #AlwaysOurBabies Image
8) Meet Maddie, now 16. She was a fit, healthy and happy teenager before she got #COVID19. Now she’s living with #longcovid, she’s been ill for 17 months and just wants her old life back! #AlwaysOurBabies #longcovidkids #BacktoSchool2021 @hollywills @mishwoz @NoisyMV @choo_ek Image
9) This is Milly. Now 15. She loved hockey & trampolining with friends. 10 mths ago she "crashed" at school & has never recovered. She is housebound/can't do schoolwork/ can't even manage a shower. She's can't remember how life was a yr ago: is this her normal?
#AlwasyOurBabies Image
10) This is 18 mths old Alyna she's now 9yrs & the happiest bunny you'll ever meet. At 6 mths old she got the measles, lost most of her muscle function which meant she lost the ability to sit, roll, and kick her legs she went through 18 months of painful physio stretching her Image
11) legs with a smile. She never complains & makes everyone smile, loves animals she's rescued everything from baby seagulls, hedgehogs & is a ray of 🌞we would give anything to see our little ray of sunshine happy and healthy again #AlwaysOurBabies #longcovidkids Image
12) Our gorgeous, healthy, BB! 7 mths, 1st boat trip. If only we had known then what we know now. He has had #longcovid for more than half of his life now inc seizures & breathing difficulties & weakened immune system. We are dreading the return to pre-school #AlwaysOurBabies Image
13) This is Kitty. Now 15. She got #COVID19 in March 2020. 18mths of chronic & disabling symptoms. 8 of those mths in bed, unable to sit up unsupported, even now she only manages 4 hrs at school & has new symptoms causing blackouts with answers. #AlwaysOurBabies #longcovidkids Image
Olivia is now 11, previously healthy, athletic she 🥰 to dance, run. She has been 🤧 for 12 mths now dealing w debilitating fatigue, nausea, brain fog, aphasia, possible seizures. She is feels increasingly let down by the government's lack of preventative measures #LongCovidKids Image
It has been 595 days since Freya and Eva felt well.
595 days of playing not being fun because their bodies are so tired and hurt so badly.
They are worried they will get #COVID19 again.
They don’t understand why there are no measures in school to protect them.
#AlwaysOurBabies Image

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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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