1) Welcome to all our new followers 🤗
#LongCovidKids runs on goodwill and support, so thank you for being here. #gratitude
What does LCK do though? If you are new, you might be wondering, so we thought we would a tweet thread might help!
We started ⬇️
bit.ly/3pU0oju
2) This brought lots of #longcovidkids families to our door, so we set up a place to connect & now support over 2000 families all facing the same challenges. Since December we have been welcoming about 100 families, often with multiple #longcovid kids.
facebook.com/groups/longcov…
3) We realised #longcovidkids was different to #longcovid so we set up the #LongCovidKidsStudy with @PeopleWithApp to learn more & support researchers & Drs.
Download the app to get involved & select Long Covid Kids to be involved.
bit.ly/PeopleWithAndr…
bit.ly/PeopleWithiOS
4) Hearing & experiencing the daily struggles of families experiencing disbelief, finding their #longcovidkids symptom concerns were minimised & ignored we started sharing members stories to raise awareness. @DailyMailUK were the 1st to help us.

dailymail.co.uk/health/article…
5) As LCK featured in multiple articles we have experienced an increase in trolls, doubters, and deniers, as well as enquiries. We now answer about 30 emails a day....yes, we are all volunteers.
So we set up a website to give more info on #longcovidkids
longcovidkids.org/long-covid-kid…
6) It wasn't long before we started hearing from international groups and families with #longcovidkids. Now our website is translated into 10 languages & we have launched a campaign to highlight the effects of #Covid on kids. #LCKGlobal

longcovidkids.org/member-stories. .
7) Although we are often told that #longcovidkids is 'in our heads we know that isn't true. We know the truth that #Covid harms children is economically unpleasing but we won't let it get swept under the carpet. We will continue to ensure children have a voice in this pandemic.
8) So we advocate, to the best of our #LongCovid ability while caring for #longcovidkids; attending meetings, and giving presentations with/to @NHSEngland @fhcappg @WHO @ISARIC1 @ptsafetylearn @NEUnion @IHM_tweets @AHPLeader @GloPID_R , #teamwork

longcovidkids.org/our-team
9) Observing so many kids, we noticed 'trends/clusters' so we launched our own survey. The 1st recorded #longcovidkids symptoms, the 2nd looked at specific clusters.
preprints.org/manuscript/202…
10) Interestingly many adult surveys are self-reporting, and yet for some reason, this seems to be an issue for #LongCovidKids 🤔 We are asking why?

We report honestly on the @ONS & @GOVUK #COVID19 child figures & why they are likely to be under-reported.
11) We are calling for a clear @govuk child-focused public awareness campaign to help families recognise #COVID19 symptoms, when & why to #testtoprotect
Why is the @CDCgov symptom list so much more comprehensive @MattHancock @JimBethell ? Can you update the @NHSuk list, please?
12) We work hard at #mythbusting, yes #LongCovidKids experience debilitating #fatigue, but they also experience #chestpain, #rashes, #jointpain, #swelling, #siezures #neuropsychiatric symptoms , #nausea, #insomnia, #covidtoe & more. #paediatric #research is vital.
13) More than anything we want to prevent more kids from sharing our story. We are calling for the @educationgovuk to put robust mitigation measures in schools.
Our awareness pack provides information to support informed decision making.
#LCKSchoolPack longcovidkids.org
So there you go, that's us in a nutshell.
Oh & we run our SM, signpost families, collate research articles & network.

If you would like to support us please RT/donate/ask your followers to follow us and add #Longcovidkids or 🧡 to your profile. 🙏🏼
longcovidkids.org/donate
Not an easy watch, these images may be upsetting. They certainly are for the families living with them day in, day out.
#longcovidkids needs understanding, #BeKind. You may not want to believe it exists, but it does, and we hope can avoid it. #StaySafe #LongCovidKids
Oooh that should say 100 a week !

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Long Covid Kids 🧡💙🧡 #LongCovidKids #FBLC Profile picture

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More from @LongCovidKids

24 Apr
Dr David Strain, a medical lecturer at the University of Exeter who runs long Covid clinics, says he is “seeing more and more cases of children who’ve got long Covid” and thinks the prevalence in children is probably underestimated. #longcovidkids
thetimes.co.uk/article/the-ra…
"There is no easy definition of long Covid. It’s “a bit of a hotchpotch”, says Strain, University of Exeter. “Although we talk about it as if it’s one disease, it’s very clearly multiple pathologies affecting different people differently"

#longhaulers #longcovid @thetimes
Read 5 tweets
31 Mar
💈WOW 🤩

This school rocks!
We need to reduce #Covid_19 in transmission in schools.

Great to see this headteacher taking a proactive approach to #makeschoolssafe and going beyond the inadequate @educationgovuk guidelines.

@BBCSouthNews
#CO2monitors
@Dr2NisreenAlwan
We don't want your kids to share our story.
The only way we know how to reduce #longcovid is to avoid #COVID
Download your school pack to understand more about #longcovidkids & how to reduce risk in your school.

longcovidkids.org
#LCKSchoolpack #LCKMaskHeros
Read 5 tweets
30 Mar
💈THIS ⬇️⬇️⬇️ is what happens after a 'mild' dose of #COVID19 .

Who is following up on the 'mild' cases?
Who is giving these kids support?
Who cares that they have been stripped of opportunities?
Who cares that parents are losing their jobs while caring for their children?
💈Who is giving guidance to school attendance officers who issue fines?
Who is creating a clear child-focused awareness campaign to help families and carers identify asymptomatic infection?
Who is funding CO2 monitors to reduce transmission?
💈Who is arranging financial support to a parent unable to work they are now a full-time carer?
Who will change the questions on the @GOVUK 'book a test' website to inc kids symptoms so parents don't have to lie?
#LongCovidKids
Read 9 tweets
14 Mar
💈One Year On. Our scrapbook.

Kids do get #COVID19
Kids can be #Asymptomatic or #Atypical.
Kids can have a mild infection, or get #PIMS
Kids can get #LongCovid

2000 kids NOT yet better.
Families disbelieved.

⚠️Contains graphic images.

longcovidkids.org #MothersDay
The numbers of children with #LongCovid are rising with every #COVID19 infection.

⚠️1 in 8 primary age children will get Long Covid
⚠️1 in 7 secondary age children will get Long Covid.

It appears to makes no difference if a child has a pre-existing condition or not.
Tragically children can die.

Thankfully the numbers are low compared with adults.

Every family that has lost a child will be devastated, the fact the numbers are low will have no bearing on their grief.

longcovidkids.org

#LongCovidKids #MakeSchoolsSafe
Read 6 tweets
14 Mar
Happiness is when your beautiful babies make breakfast in bed and handmade earrings. ❤️
At a young age, I was told I might not be able to have children, so I started my family young and was blessed with two girls.
#MothersDay #LongCovid
I had a rainbow 🌈 baby who is in my heart.

I can’t see my Mum today but I am truly lucky to have a mother who raised me to have the strength and resolve. I can’t wait to hug her again.

I have a Grandmother watching over me who taught me empathy, compassion and kindness.
Her presence is felt every day. I miss her hugs.

I have supported women who hope to become mothers, mothers to be, mothers that have lost, mothers whose children have children of their own & women who chose not to become mothers.
It’s a privilege to support women, it’s been
Read 4 tweets
24 Jan
1/4 Meet 14 year old Abi. This photo was taken before #Covid in Nov.
She lost her sense of smell & taste & had a couple days of flu like symptoms & was left a bit fatigued.
Dec 8th she went to bed as normal, Dec 9th her Mum couldn’t wake her & started CPR until the 🚑 arrived.
2/4 She was rushed into resus & put into a medically induced coma, unable to breathe for herself. She remained unconscious for 4 hours, then spent 5 days in hospital before being sent home. She started having seizures which the DR days is bought on by anxiety. They have no
3/3 Pattern. She has lost mobility, after seizures she looses speech, is confused & has rashes, fast HR, sore tongue, hair loss, poor cognitive function. The DRS are dismissing #Covid_19. Abi used to be captain of her football team & now her Mum is trying to get a stairlift to
Read 4 tweets

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