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Long Covid Kids #LongCovidKids #CleanAir Profile picture
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Mar 4 • 3 tweets • 3 min read
⚠️ This is an honest 🧵 about #PANS triggered by #SARSCoV2 it is one of the many conditions that appear to sit under the ☂️ term of #LongCovid.

We see many children through our support services who receive this diagnosis.
Not all children with LC experience PANS.
@PandasPans
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For more specific information about #PANS please see @PandasPans

For support with all #SARSCoV2 triggered illness (Long Covid) please join our community.

You are not alone.
#LongCovidKids

@MichaelRosenYes
longcovidkids.org/support-servic…

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More from @LongCovidKids

Long Covid Kids #LongCovidKids #CleanAir Profile picture
Aug 6, 2022
🧵 Our guidebook provides information, support and signposting.

📕 Chapters for young people, parents & caregivers & schools.

🔬Evidence based information & case studies

🤗 Nobody has to feel alone.

To learn more ⬇️

longcovidkids.org/support-guide

#LongCovid #LongCovidKids ImageImageImageImage
Long Covid Kids started as a grassroots organisation in September 2020.

In October 2021 we became a registered charity.

Our patron is beloved children’s author @MichaelRosenYes

#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children ImageImageImageImage
With the support of experts, scientists, paediatricians, doctors, nurses, researchers, advocates, occupational therapists, physiotherapists teachers & educational psychologists our team of volunteers created a guidebook to raise awareness & educate.

#LongCovidKids #LongCovid ImageImageImageImage
Read 26 tweets
Long Covid Kids #LongCovidKids #CleanAir Profile picture
Jul 6, 2022
Minimising the experience of children living with #LongCovid has an ongoing impact on those suffering.

"This is Daniel. He is 16 - LC for 16 months.
Due to ongoing stomach pains, he is scared of eating & now has an eating disorder too, skin & bone"

#LongCovidKids #ChildHealth
"This is Poppi. She is 7 - #PIMS March 21 after #Covid19, she was so poorly in @AlderHey for 2 weeks. Poorly ever since.
Reinfected in Feb 2022 at school - now worse than ever. Drs haven't a clue what's wrong with her I, want my little girl back"
#LongCovidKids
Meet Emily Saville
"battling Long Covid since September 2021. Fit and well with no underlying health issues before. Now uses a wheelchair when going out of the house due to chronic fatigue and is relearning to walk again"
#LongCovidKids @lou_sav
Read 8 tweets
Long Covid Kids #LongCovidKids #CleanAir Profile picture
Jun 1, 2022
💈On the day the @ons report 26,000 CYP have symptoms for at least a year (⬆️ 3000 from last mth)
we received an email from @10DowningStreet in response to our visit on April 1st
It confirms the concerns of the children⬇️

"We feel ignored"

@FYI_SkyTV

April 1st - 12 #children living with #LongCovid traveled
to #london to deliver their own letters documenting their #pain, loss of #sight, #mobility, organ damage, diagnosis of #PANS #MECFS #FND #POTS #MCAS and the detrimental impact it has had on their lives.

#LongCovidKids
100+ page guide providing evidence-based information on #LongCovid in CYP from industry experts, research, and statistics from @GOVUK @ONS.
Did anyone read it?
We were assured @BorisJohnson would receive it.

#LongCovidKids
Read 13 tweets
Long Covid Kids #LongCovidKids #CleanAir Profile picture
May 5, 2022
1) Are you taking parental leave or having a break from work to care for your children with #longcovid?

A parent asks -

“I am wondering how parents are managing their work life whilst their little ones are so poorly. So far I have juggled things and taken annual leave but
2) it’s difficult to see how this is sustainable with no end in sight.

@longcovidwork @DHSCgovuk @CitizensAdvice
are you able to help ?

#LongCovidKids
Parent

"If my husband wasn't still working at home, I'd have to give up work. Daughter 17 but needs reminded to eat, drink etc"

#LongCovidKids @longcovidwork
Read 17 tweets
Long Covid Kids #LongCovidKids #CleanAir Profile picture
May 4, 2022
Have you seen the #LongCovidKids Padlets?
@padlet is an interactive website/app that provides a visual library of internet links that our team updates as new information emerges.
Think of it as a scrapbook of useful links
Since the start of the pandemic, we have been collating
resources & info to help us improve recognition, support & recovery
We have five Padlets suitable for different audiences;
• Children bit.ly/3DbaR2d
#LongCovidKids #ShineALightOnLongCovid
@FYI_SkyTV @suepeters21 @tes @ihv @earlyyearsontap @LucindaNatDoc @PYL_London
• Young people bit.ly/3IEJOh0

@RCPCHtweets @childcomwales @ChildrensComm @ChildrensCommNZ @SeneddChildren @AppgCoronavirus @fhcappg @NEUnion @NVTweeting @NHSuk @UKHSA @PublicHealthW @childcomwales
#LongCovidKids #ShineALightOnLongCovid
Read 7 tweets
Long Covid Kids #LongCovidKids #CleanAir Profile picture
Apr 1, 2022
These children have endured chronic and disabling symptoms.

Today they handed in their letters for @BorisJohnson to share their experience, hopes & ongoing infection risk fears.

#ShiningALightOnLongCovid #LongCovid #LongCovidKids
CEO Sammie McFarland handed in the new charities NEW support guide available as a free digital resource for families, kids, schools, healthcare professionals parents and caregivers.

#ShineALightOnLongCovid #LongCovid #LongCovidKids
Founder and CEO of LCK Sammie Mcfarland "Today is an incredible testimony to all the family's children and volunteers from our organisation who have worked tirelessly throughout the pandemic to raise awareness for children living with Long Covid who have been ignored.
Read 15 tweets

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