Living with PANS/PANDAS was like 'short blur of time' for Cambridge student
Calls to raise more awareness of the condition have been made
A Cambridge University student has said his time living with a rare brain condition was like a "short blur of time".
Greg Burford was 12 when he had PANS (paediatric acute-onset neuropsychiatric syndrome), where antibodies mistakenly attack the brain following an illness like a chest infection.
Greg suffered symptoms like severe hallucinations for nearly a year before taking a two week course of antibiotics - which helped him recover.
"It feels like a very short blur of time and it was about a year which, when you're 12, 13, it feels longer than a short blur, but I think it was the monotony of the experience, the same thing every day," he said.
"It only dawned on me about a year ago that I was almost sectioned during my illness.
"For a good six, seven years since I've not had the condition, it hadn't dawned on me that had I have been sectioned, it's really unlikely I would've been treated effectively and come out of that."
6,000 families being supported
Greg's story comes as PANS PANDAS Awareness Day aims to raise awareness of the condition through organisations and professionals supporting families, children and young people living with PANS and PANDAS.
The charity PANS PANDAS UK says it's currently supporting 6,000 families in the UK, who have children believed to be suffering with PANS or PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
A survey by PANS PANDAS UK suggested 95% of GPs did not know about the conditions.
Vicky Burford - Greg's mum and co-founder and director of the charity - believes the condition is "rarely diagnosed.
"There are few people with an actual diagnosis, but in reality there are many many people who are displaying the symptoms.
"Knowing something's wrong with your child, and knowing there isn't any support for them, that's a really difficult place to be."
The charity has sent an open letter to the Health Secretary calling for action to help raise awareness.
They've also begun work alongside multiple health bodies, including the BPNA (British Paediatric Neurology Association) & the Royal College of Nursing to develop clinical guidelines for doctors to use.
"There is a way out of this"
Greg believes there is hope for young people going through a similar experience to what he did.
"There is a way out of this; it needs the right people to take notice," he added.
"About a year ago, I almost relived some of those thoughts and it feels strange that everything I have now and the people I know, things are going great but they definitely wouldn't be if I had been sectioned.
"As much as that year was the most painful experience I've had, it was probably the best thing that ever happened to me because coming out of it gave me this great sense of perspective; I know how bad things can get."
The Department of Health have told us they "look forward to seeing the outcomes of the collaborative work that the working group, supported by NHS England, has embarking on to develop standards of care for those with both PANS or PANDAS in the UK."