Vocalist & Writer. Raising awareness in Wales π΄σ §σ ’σ ·σ ¬σ ³σ Ώ and the UK #pans #pandas #SavingPrivateRyan https://teapawt.net/t.co/kMCwUK6RwY
UK
Joined January 2012
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#SavingPrivateRyan This is a snippet of our story. Please help me to get the word out there and share this post Any donation is a step closer to Ryan getting the treatment he needs Please help me to save my son Time is running out Deepest gratitude Aly x
gofundme.com/f/rqqfkz-savingβ¦
We've had the most isolating winter and now summer to date. A retweet would be so helpful π Stardust may just be a lifeline for us.
Deepest gratitude
Aly
gofund.me/501aeca2
A disconnection had to be made from living in the perpetual fear that conditions like Pans Pandas and 'the fight for treatment' bring.
Our family is happier as a result, we have found other pathways and we no longer live in fear and dread.
facebook.com/share/p/ut961jaβ¦
Day & Night
To the child who does not understand what is happening to them,
To the child who is now an adult, who does not understand why the cruelty never stops,
To you both who live with terror
Through each day
Through each night
(1 of 6)
Tics Involuntary movements seizures?? Many children and adults left to suffer many who have #PANS #PANDAS one condition that is not investigated is Cerebral Folate Deficiency progressive yet treatable If not treated can cause diminish in cognitive function
mdpi.com/2075-4426/14/2/166?β¦
1. Have you ever wondered why there are so many people using adult mental health services or at least needing them but not getting a service? Physical conditions #PANS #PANDAS & other comorbidities are likely a majority but there is NO investigations into #adultpanspandas
2. No research into #adultpanspandas in the UK Children WILL become adults with these conditions the services WILL become even more stretched as more undiagnosed and untreated children arrive to adulthood still suffering #PANS #PANDAS thanks to @PandasPans children have a chance
3. Adults who currently have #PANS #PANDAS and other comorbidites have no chance of recovery instead they live with pure horror many locked away in institutions CLINICIANS #adultpanspandas EXISTS Stop the torture
@Hopesaxons @HelenPe28465597 @PinotYouWantTo @georgiearms
Aly Shields π» retweeted
Conditions #Pans #Pandas do not miraculously disappear at age 18!Left untreated can be carried to adulthood. Adult onset can also happen!Lack of recognition/denial of conditions has resulted in generations of adults likely un/misdiagnosed #PansPandasHour aspire.care/what-is-pans/wβ¦
This represents research into #pans #pandas in adults Take away 'peadiatric' because people can be 'triggered' in adulthood then symptoms ignored or at best have antipsychotics chucked at them THIS IS A PHYSICAL CONDITION #adultswithpanspandas #inflammation #SuicidePrevention
Aly Shields π» retweeted
An important message from Awareness Day 2023 π£#Pans #Pandas do not disappear on a childβs 18th birthday!π£Left untreated they are carried 2 adulthood where there is even less chance of correct treatment/support. Please watch & understand lives are being lostππ»#PansPandasHourππ»
Pans Pandas awareness day 2023 The desperate fight for realistic investigations and treatment continues Young adults are taking their lives because of the horrors of conditions. Please do something! #PANS #PANDAS #Awareness #inflamation #OCD #dyautonomia #CFD
Aly Shields π» retweeted
We know from personal experience how π brain inflammation is. I really hope that change will continue to happen in 2024 ππ»
@PandasPans are an amazing charity & do such to help those families affected #NewYear2024
Aly Shields π» retweeted
#NewYear2024 @HelenPe28465597 @dollyjoyner @AlyAShields @firebug70 @PaulaScottUK @wendychambLD @CharmingAngelCo @TiccerU @Katie5news @NurseDiane2020 @CounsellingSam @PandasPans @LongCovidKids @drclairetaylor
Aly Shields π» retweeted
ππ»@Hopesaxons for all you do to help others and raise awareness about brain inflammation caused by infection #Pans #Pandas #Covid #LongCovid hoping next year brings greater awareness, prompt diagnosis and treatment for all ππ»π
And here we are....the end of 2023 and guess what? Still no research into Adults with #pans #Pandas No diagnosis, no service, no recognition at all in the UK Instead adults r left to fester in misery and torture #ocd #inflamation #tics #involuntarymivements #psychosis #suicide
We need a adult voice re #pans #pandas and comorbidites this group is a start facebook.com/groups/31078549β¦ If you know anyone who may benefit share the link @Hopesaxons @PinotYouWantTo @CharmingAngelCo @PaulaScottUK @NurseDiane2020 @PandasPans @Doc_Cunningham @A_Mueller_12 @SHughesDr
