Emily Jackson

PANS PANDAS awareness advocate after my daughter has suffered horrifically for over a decade. Catch up NHS it’s not rare, just rarely diagnosed 💔

[Emily Jackson @PinotYouWantTo]

PANS PANDAS Awareness Day 20. This is Tillie. Tillie has PANS, this is her voice describing how hard it is to live with & how necessary awareness is. #hellomynameis #Iamjustamum #PANS #PANDAS #ocd #emotionallability #NHS #BeMyVoice #anxiety #CAMHS #Neurology #APPG #Psychiatry

[Emily Jackson @PinotYouWantTo]

So sad.
He was a legend 🥊

[Sky Sports News @SkySportsNews]

Former world boxing champion Ricky Hatton has died at the age of 46, the PA news agency understands.

[tern @1goodtern]

#PansPandasHour

[Emily Jackson @PinotYouWantTo]

@PANSPANDASUK @Hopesaxons @CharmingAngelCo @AlyAShields @melpayne77 @notestomyboy @aylott_laura @kathryn_gillett @np9000 @W1986Rebecca @RuudGrethe @joanneG007 @HelenPe28465597 @HuitsonJ49909 @georgiearms @dollyjoyner That three years has raised so much awareness and I hope it goes a way towards helping others get answers far more quickly than most of us did! 8 yrs to diagnosis in Ottilies case.
A huge well done to all involved. True superhero parents and warrior kids ❤️

[Emily Jackson @PinotYouWantTo]

@notestomyboy It is unbearably hard and no one gets it unless they have been there. I clung to the stories and never thought we’d see any recovery.
Your posts break my heart as I know how it feels and all I can offer is an ear if you need one. Sending love and strength x

[Notes to my boy ✉️ @notestomyboy]

#panspandashour the horror of PP means I’ve barely seen or spoken to my Son now for 5 years when he was 9. He lives with his Mom and won’t leave the house or be seen. My only way to communicate is letters, cards & photos. He never replies. Here is today’s card. Please retweet to spread awareness. I love you mate ❤️

[Emily Jackson @PinotYouWantTo]

@RigidSweets @FredXylonix 12 yrs it took to get my girl well. She was on adult strength psychotropics & all CAMHS could offer was to up and up them. She self harmed on Sertraline but apparently that side effect was ‘negated’ by the ‘benefits’ it was finally good old fashioned antibiotics that saved her!

[Emily Jackson @PinotYouWantTo]

My daughter had brain inflammation and stopped eating. My tiny 7 yo lost 10lbs in 3 weeks, she had PANS. 100% they can 💔

[Brain Inflammation Collaborative @BrainInflCollab]

Could some eating disorders be attributed to the impact chronic inflammation has on the brain?

Let us know what you think by leaving a comment below.

[Emily Jackson @PinotYouWantTo]

@BrainInflCollab Thank you. Yes she is so there is always hope. It took 8 ye too get a diagnosis and a few blips after but she’s a healthy weight today. Sadly some PANS symptoms I think will always be there but no where near as badly as at the peak … timely treatment & awareness are everything x

[Emily Jackson @PinotYouWantTo]

@1goodtern Could he be any more narcissistic … and dangerous, let’s not forget dangerous 🥹

[Emily Jackson @PinotYouWantTo]

@1goodtern They look like golden toilet Trumps … quite apt!

[Notes to my boy ✉️ @notestomyboy]

There will be no fun, walks, sport, clubs, family time, time with friends or Sunday dinner for this beautiful boy today. It’s been the same for about 1,800 days now due to PANS PANDAS. Today he will be remain largely isolated, unwashed and undressed at his Moms house. We are making progress with awareness largely due to the tenacity of @PANSPANDASUK but there’s so much more to do. If you work with Children in any capacity please make yourself aware or reach out so I can explain more. Love you mate ❤️

[Emily Jackson @PinotYouWantTo]

@celticsting @jomickane I’m 50. Went on a student exchange at 17 to Paris. We had to go through a metal detector to get into the college over there … why are we so far behind …. 🤔

[Dritan Agalliu @DAgalliu]

I am appalled by the recent AAP report onPANS. While it is a step forward that AAP is recognizing PANDAS/PANS, they have left out CRITICAL RESEARCH MILESTONES from many labs including mine who have advanced our understanding of the disease. Shame on them! https://t.co/U0CkMczUdU

[Emily Jackson @PinotYouWantTo]

@thiscryptolyfe @cranky_and This has really upset me. Your poor daughter. What an horrific think to happen. I had surgery yesterday most staff were fabulous, one or two indifferent.
I wanted the fun corner of recovery, I got sullen and no bedside manner! I hope that your daughter is healing inside and out x

[Emily Jackson @PinotYouWantTo]

@cranky_and That is disgraceful. I had. Surgery yesterday and there were clearly defined areas for men and women and a separate children’s area too. I had breast surgery and I certainly didn’t want to discuss it with all and sundry to hear!
I hope your daughters recovery goes well xx

[Emily Jackson @PinotYouWantTo]

@liamgallagher Smashed it!!!

[Emily Jackson @PinotYouWantTo]

@SomeAreDead @uniofwarwick Dropped my son off on Thursday … we only live 5 roads away but he had his heart set on living and studying at such a fabulous and highly ranked University!
I wish I was joining him 😂 the buzz on campus is fabulous.

[Emily Jackson @PinotYouWantTo]

@frankbrunoboxer Enjoy Frank. I can’t wait 🥊
It was watching you as a kid that gave me a love of boxing … probably because nearly every one was a knockout! x