PANS/PANDAS UK

Registered Charity Number 1178484

Total raised
£6014.30 + £1060.25 Gift Aid = £7074.55
Fundraising
£5586.00
+ £1007.75 Gift Aid
Donations
£428.30
+ £52.50 Gift Aid

About PANS/PANDAS UK

PANS and PANDAS are a set of conditions which result in inflammation of the brain, causing a variety of neuro-psychiatric conditions such as OCD, tics and eating disorders. Please see our website for more information. www.panspandasuk.org


PANS PANDAS UK is a Charity which was established by a dedicated and determined group of parents with children who are affected by PANS or PANDAS in order to raise awareness and understanding of these conditions amongst the general public and medical professionals.  PANS PANDAS UK are working closely with a Network of Doctors in order to ensure better diagnosis and early effective treatment for those suffering with these little understood, but life changing conditions.


It is the mission of PANS PANDAS UK to ensure that these conditions are known about in every GP Surgery, every school and every hospital, so every child can receive an early diagnosis and effective treatment. 

Get fundraising!

If you'd like to run, swim, bake (or do anything else to raise some money), click the button below to get started. It's quick and easy to register and by doing so here at Wonderful.org, you can be sure that every penny raised will reach PANS/PANDAS UK.

Current fundraising pages

Charlotte & Emilia Challenge

Charlotte & Emilia will each be running 4km (Emilia) and 6km (Charlotte) of a 21km half marathon in two different teams In support of Pans Pandas UK.
Charlotte became extremely ill following with what we assumed to be influenza in Year 2 aged just 7.
After being bedridden with a high temperature for 2 weeks in March '16 she completely changed overnight developing severe neurological symptoms.
It took us almost 2 months to obtain a diagnosis for a condition many Doctors had simply not heard of.
What we now know is that she had a type of immune-mediated encephalopathy - (inflammation of the brain) following infection.
She has endured countless blood tests, MRI’s, EEG’s, Lumbar Punctures and 4 Intravenous immunoglobulin infusions to correct her immune system and seen in excess of 20 Doctors.
She is recovering from her ordeal as the brain takes a long time to heal.
We were fortunate as we had the means to get the care she needed but even then it was a tremendous battle.
However, there are many children who are simply not receiving timely and appropriate care to manage what is an extremely frightening condition for parents and children alike.
PANS PANDAS UK was established in 2017 by a small group of parents affected by the illness to ensure timely and accurate diagnosis and to raise the profile of these conditions.
They have been instrumental in helping create network of physicians consisting of Neurologists, Immunologists, Paediatricians, Neuro-Psychiatrists and Neuro-Psychologists and the first UK treatment protocol was created in 2018 which is currently pending review by the Royal Colleges.

Sue Adams

  • Education

24 Hour Swim

My son Jack was developing normally, a very happy chilled baby. He unfortunately started having tonsillitis and has had it 11 times already. What we thought was a normal infection was actually causing inflammation on a part of his brain. Every time he had tonsillitis his behaviour would drastically change he would become aggressive and have OCD, he also developed a tic which was impacting on him playing with his friends. He then developed anxiety and had trouble wanting to communicate and eat.We took Jack to many different doctors and we could not find the answers to these changes in behaviour.For a long time we thought Jack might be autistic, we were searching for answers and came across a clip on
This Morning. It featured parents who were discussing their son, he had exactly the same symptoms as Jack after having a strep A infection.This is where we discovered PANDAS, we contacted the doctor who was on the show and after just two weeks of treatment we felt like we had our son back. His tic is now completely gone and his behaviour has massively improved. Jack is now on antibiotics until he has his tonsils out in February to prevent him getting the Strep A infection which causes the problems.We still have a long way to go but finally feel like we are heading in the right direction.PANDAS is recognised by the
World Health Organization (WHO)
but sadly only 10% of
nhs.uk
doctors have heard of the condition meaning many children get mis-diagnosed with other conditions such as autism. If PANDAS is caught early it can be effectively treated and can be reversible.Unfortunately there are many who aren't as lucky as we have been and are left totally unaware of the condition.To raise awareness and fundraise for the
PANS PANDAS UK
charity I am going to compete a 24 hour swim in Loch Lubnaig with
Vigour Events
in Scotland on the 22nd of June. I have to complete a mile every hour, what remains of each hour is taken as rest.Please donate if you can.It's a huge challenge so your support would be massively appreciated.Thanks, Neil.

Neil Gilson

  • Education

Stoptober in aid of PANS/PANDAS UK

In September 2012, our world changed forever, suddenly, overnight. Our son and Grandson, Thomas, had been a happy, neurotypical and attentive little boy up until this point. Reaching milestones early and teaching us what it is was like to have an 18 month old "boy." Then, during a holiday to Menorca, he changed suddenly overnight. He was not hearing us when we called his name, he screamed in his high chair constantly, he barely ate his food, he looked vacant and panicked all at the same time. I always remember the pit-in-my-stomach feeling and the question that would later ring true in more events like these, before his diagnosis finally came "where had my child gone?" By the end of the holiday, Thomas had a raging temperature and came down with a very severe case of hand foot and mouth. Ah! That must have been what was wrong...but as the weeks and months went by, he never came back to us. He started to repeat the same question over and over, he was inattentive and hyperactive all the time, he couldn't sit and focus for more than a minute, he became fussy about textures in his food, he would become aggressive and violent for no apparent reason, he was fearful of being left on his own, he started to have night terrors and often had a panicked look in his eyes. This continued for another 2 years and then came the Strep infection in the summer of 2014. We didn't realise the red rash was Strep at the time and just like that, our child, whom we had come to accept may have difficulties, had gone from being a 3 and half year old, to an 18 month old...overnight! He could barely communicate, all his toilet training was gone, he looked terrified all the time, he was eating things from the floor, he was running away from us at every opportunity. Again, I asked my husband "where has he gone?" After 4 months, Thomas' rash was finally swabbed and diagnosed as Strep but after 2 weeks of antibiotics, the Strep infection was still there and had very much made itself at home, in my son. The rash came and went over the next two years and every time I tried to swab it, it would come back negative or disappear before I could get to the doctors but every time his symptoms would either worsen or a new one would appear. I suspected PANDAS after researching "sudden change with Strep infection" but the paediatrician said we would have to wait for further evidence. In March 2016, Thomas came down with Scarlet Fever, his symptoms were initially unbearable and as a family we were at breaking point. I couldn't leave him alone in a room with his sisters for fear of him hurting them, he would scream and cry inexplicably for hours after school, about everything, all the while looking terrified and panicked. His treatment of antibiotics turned everything around in 4 days. I looked at the articulate, cheeky, quiet and happy little boy playing with his sister for the first time in a long, long time and cried. "This is my son." I remember feeling angry and robbed of years of a relationship with him due to him having a disorder that is not recognised by the medical professionals. The next few years haven't been easy. He still hasn't been formally diagnosed but at least he is able to access the antibiotics he needs to protect him from further infection, after Great Ormond Street doctors realised his symptoms were triggered by infections. This disorder needs to be recognised and treated immediately, as this gives the best outcome for these children. Thomas was left untreated for 2 years and unfortunately still has residule symptoms, which will worsen during any viral or bacterial or fungal infection. Please help us to raise money for the PANS PANDAS UK charity so that we can increase awareness of this life changing and debilitating condition.

Gillian Buckland

  • Education
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