Help Chloe get life changing tests and treatment

Story

Hi! Thank you for visiting this page. My name is Sam and I’m fundraising to help my close friend Chloe pay for testing and potential treatment that could allow her to live the full life she’s always dreamed of. This is Chloe’s story… Despite being a very happy child, at age 10 Chloe suddenly started experiencing her first symptoms of anxiety and OCD. By 2011/12 this got progressively worse and Chloe began struggling to concentrate in school, skipping lessons and restricting her eating. Less than a year later she began self harming. She was referred to CAMHS but it didn’t help. In 2015, Chloe tried to end her life for the first time. She was subsequently sectioned under the mental health act and admitted to a psychiatric ward. Chloe remained in hospital for 4 years in order to keep her safe and it was during this time she began experiencing dissociation, paranoia and hallucinations. Chloe’s OCD had also got to an extreme, all-consuming point in which she couldn’t think about anything else. Her compulsions were taking up to 12 hours a day to complete. Examples of her compulsions include, showering for 4 hours a day and having to complete ‘stepping’ rituals which sometimes took all night because she had to do them until it ‘felt right’ or she believed something dreadful would happen to her family. In 2019, Chloe received expert OCD treatment in London which she worked at extremely hard at and she was finally discharged back home after 4 years of being an inpatient. In 2021, Chloe had successfully auditioned for a place at a prestigious performing arts school and was very excited to be starting a new chapter of her life. But in November, she suddenly became unwell with a virus and was taken to hospital after having a seizure. Unfortunately, this was only the beginning, and less than 6 months later Chloe was having frequent seizures and also began experiencing tics. Her first tic was a shoulder shrug but this soon progressed into shouting, swearing, random phrases and painful tic attacks. All her tests including an EEG (which tests for epilepsy) have all come back clear but 2 years later, Chloe’s condition has deteriorated so much that her seizures are often every single day and the longest she’s gone recently without one is 3 days! They are extremely debilitating and cause Chloe and her loved ones a vast amount of distress. They take the form of a tonic clonic seizure and leave her with paralysis down her right side for hours/days afterwards. Unfortunately Chloe had to leave the performing arts school and move to a course that was less demanding but even this is becoming extremely difficult to continue and she might have to leave despite being near to completing her degree. Chloe has gone from being a fit and healthy individual who danced for 15 hours a week to often being wheelchair bound and sometimes needing assistance to do the most simple tasks like showering. This is extremely distressing for her and leaves her feeling demoralised and frustrated. Despite the severe impact all this is having on her life, doctors and other medical professionals have consistently dismissed Chloe, attributing all these symptoms to anxiety and not providing her with any treatment or a way forward. As health professionals weren’t coming up with any answers, Chloe did her own research and came across a condition called PANS/PANDAS which causes inflammation in an area of the brain called the Basal Ganglia. Instantly, everything seemed to click. Chloe felt like it was written about her and all the symptoms fit with her experience, including her mental health struggles. She suddenly felt like there was hope… However, the NHS doesn’t test or treat this condition so the only way is to go privately and this is extremely expensive. Chloe paid £400 for an initial appointment with a PANS specialist who strongly believes she could have this condition. He has sent her for tests which have cost a further £2000 and this is only the begining. If Chloe has this condition it may be very difficult to treat because it’s been left untreated for so many years. There is also a deadline because the specialist only treats adults up to a certain age and Chloe is already at that age limit. If she cannot afford to continue seeing the specialist, this will be the end of the road and Chloe may never know if this is what’s destroying her life or if there’s a chance of recovery. Thank you for taking the time to read Chloe’s story. If you would like to hear more about Chloe’s difficulties she has a TikTok page @chloeseizes but please be warned it does contain footage of her seizures which some may find upsetting. Here are some useful resources that provide more information on PANS/PANDAS. https://www.panspandasuk.org/ https://www.rcn.org.uk/news-and-events/Blogs/pans-pandas-a-mysterious-and-debilitating-paediatric-disorder-180523 https://open.spotify.com/show/5tiNdFylQgHhDu7eFkuUmb?si=8qnde_6uQ-mF8JCZ9TenNg

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This is Chloe’s story…

Despite being a very happy child, at age 10 Chloe suddenly started experiencing her first symptoms of anxiety and OCD. By 2011/12 this got progressively worse and Chloe began struggling to concentrate in school, skipping lessons and restricting her eating. Less than a year later she began self harming. She was referred to CAMHS but it didn’t help.

In 2015, Chloe tried to end her life for the first time. She was subsequently sectioned under the mental health act and admitted to a psychiatric ward. Chloe remained in hospital for 4 years in order to keep her safe and it was during this time she began experiencing dissociation, paranoia and hallucinations. Chloe’s OCD had also got to an extreme, all-consuming point in which she couldn’t think about anything else. Her compulsions were taking up to 12 hours a day to complete. Examples of her compulsions include, showering for 4 hours a day and having to complete ‘stepping’ rituals which sometimes took all night because she had to do them until it ‘felt right’ or she believed something dreadful would happen to her family. In 2019, Chloe received expert OCD treatment in London which she worked at extremely hard at and she was finally discharged back home after 4 years of being an inpatient.

In 2021, Chloe had successfully auditioned for a place at a prestigious performing arts school and was very excited to be starting a new chapter of her life. But in November, she suddenly became unwell with a virus and was taken to hospital after having a seizure. Unfortunately, this was only the beginning, and less than 6 months later Chloe was having frequent seizures and also began experiencing tics. Her first tic was a shoulder shrug but this soon progressed into shouting, swearing, random phrases and painful tic attacks. All her tests including an EEG (which tests for epilepsy) have all come back clear but 2 years later, Chloe’s condition has deteriorated so much that her seizures are often every single day and the longest she’s gone recently without one is 3 days! They are extremely debilitating and cause Chloe and her loved ones a vast amount of distress. They take the form of a tonic clonic seizure and leave her with paralysis down her right side for hours/days afterwards. Unfortunately Chloe had to leave the performing arts school and move to a course that was less demanding but even this is becoming extremely difficult to continue and she might have to leave despite being near to completing her degree. Chloe has gone from being a fit and healthy individual who danced for 15 hours a week to often being wheelchair bound and sometimes needing assistance to do the most simple tasks like showering. This is extremely distressing for her and leaves her feeling demoralised and frustrated.

Despite the severe impact all this is having on her life, doctors and other medical professionals have consistently dismissed Chloe, attributing all these symptoms to anxiety and not providing her with any treatment or a way forward. As health professionals weren’t coming up with any answers, Chloe did her own research and came across a condition called PANS/PANDAS which causes inflammation in an area of the brain called the Basal Ganglia. Instantly, everything seemed to click. Chloe felt like it was written about her and all the symptoms fit with her experience, including her mental health struggles. She suddenly felt like there was hope…

However, the NHS doesn’t test or treat this condition so the only way is to go privately and this is extremely expensive. Chloe paid £400 for an initial appointment with a PANS specialist who strongly believes she could have this condition. He has sent her for tests which have cost a further £2000 and this is only the begining. If Chloe has this condition it may be very difficult to treat because it’s been left untreated for so many years. There is also a deadline because the specialist only treats adults up to a certain age and Chloe is already at that age limit. If she cannot afford to continue seeing the specialist, this will be the end of the road and Chloe may never know if this is what’s destroying her life or if there’s a chance of recovery.

Thank you for taking the time to read Chloe’s story. If you would like to hear more about Chloe’s difficulties she has a TikTok page @chloeseizes but please be warned it does contain footage of her seizures which some may find upsetting.

Here are some useful resources that provide more information on PANS/PANDAS.

https://www.panspandasuk.org/

https://www.rcn.org.uk/news-and-events/Blogs/pans-pandas-a-mysterious-and-debilitating-paediatric-disorder-180523

https://open.spotify.com/show/5tiNdFylQgHhDu7eFkuUmb?si=8qnde_6uQ-mF8JCZ9TenNg

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