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Team PANS/PANDAS

Team PANS/PANDAS is crowdfunding

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£287raised of £500 target by 18 supporters

Weʼre raising £500 to support PANS/PANDAS UK. Join or sponsor TEAM PANS/PANDAS "Walk the Test Way" on 29.09.19 with the Rotary Club of Romsey Test.

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Story

By Charlotte Hewlett, age 11:

PANS/PANDAS is nothing to do with the cute looking, black and white bear that eats bamboo. It's when your brain catches fire, which is what happened to my brother when he was 7-years-old. I felt very sad and really scared.

He kept saying "my brain feels funny" and "what's happening to me". Then he started doing some crazy things. The doctors said he had AUTISM, OCD and TOURETTES. But mummy said:

Mummy spent a lot (and I mean A LOT) of time doing special reading called ‘researching’ and made lots of phone calls. My brother saw loads more doctors, nurses and consultants who did lots of tests .........................

.................and eventually they said he had PANS/PANDAS. PANS stands for Paediatric Acute-onset Neuropsychiatric Syndrome and PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) .

Our family got a lot of help from a charity called PANS/PANDAS UK – Mummy and Daddy joined their support group on Facebook and said the other parents understood when no one else did.

A lot of children have PANS/PANDAS but it’s often misdiagnosed as autism, anorexia, anxiety and Tourettes . It can happen to anyone and can be caused by a simple bug , like a cough, cold, earache or chickenpox. ........but it can also happen because of toxins and other things that affect your health. Toxins from mould caused my brother's PANS/PANDAS.

Basically, your immune system helps keep you well and makes good antibodies to fight the bug or problem. But sometimes the antibodies get confused and attack the brain by mistake and that’s when things go wrong.

Unfortunately, only a few doctors in the UK know about PANS/PANDAS, so it was hard to get treatment for my brother. The doctors said he could have this thing called ‘IVIg’, which is like ‘new blood’ but at the last minute the NHS changed their minds.

My parents had to fund-raise to get my brother treatment, other families have to do the same. Three years on and my brother is getting better, but other families and children are really struggling to get a proper diagnosis and treatment.

The charity want to help them. PANS/PANDAS UK is a group of parents and medical volunteers who want to ensure every GP, hospital and school in the UK recognise the symptoms of PANS/PANDAS. This means early diagnosis and proper treatment for children like my bro'.

Please note: this Just Giving page has been set up for "Rotary Club of Romsey Test Trust Fund" who are the organisers of this walk. After the walk, all the donations are paid to Rotary who will then distribute to our chosen charity PANS PANDAS UK.

Please help these children be children again.

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Updates

1

  • Team PANS/PANDAS2 months ago
    Team PANS/PANDAS

    Team PANS/PANDAS

    2 months ago

    Charlotte was invited to be the mascot at a recent Saints FC Women's game. She had such a great time and managed to raise a fantastic £135! Thank you all who donated!

    Update from the Page owner

    Share this update to help us raise more

3 months ago

Team PANS/PANDAS started crowdfunding

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Page last updated on: 9/24/2019 20.36

Supporters

18

  • Patricia and Peter

    Patricia and Peter

    Sep 24, 2019

    Good Luck X

  • Stacey

    Stacey

    Sep 23, 2019

    Good luck Charlotte love Ruby xx

    £20.00

  • Vicky

    Vicky

    Sep 23, 2019

    £10.00

  • Henri

    Henri

    Sep 23, 2019

    Well done Jo!

    £10.00

  • Julie Mould

    Julie Mould

    Sep 23, 2019

    Good luck!

  • Rossie

    Rossie

    Sep 22, 2019

    Good luck x

  • Catherine Kelly

    Catherine Kelly

    Sep 22, 2019

    Good luck!

    £10.00

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About the fundraiser
Team PANS/PANDAS

Team PANS/PANDAS

Romsey, UK

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