PANDAS / PANS / BGE awareness is so important because the conditions are commonly misunderstood.
Many doctors have been reluctant to diagnose a patient with PANDAS / PANS due to their own misunderstanding or the stigma around it. Some doctors aren't even aware that these conditions exist.
Unfortunately, many people have been refused access to the appropriate treatments such as antibiotics, IVIG and anti-inflammatories etc. In the UK, it can be difficult to get treatment for PANDAS / PANS / BGE under the NHS, and in places like the USA it can be difficult to get insurance to cover treatment such as IVIG in some states.
If people do not get the appropriate treatment then they may live a life having severe OCD, severe depression, psychosis, regression, cognitive decline, memory problems, personality changes, food restriction, rages, brain fog and other symptoms. No one deserves this. With the right treatment, people can go into remission and live without symptoms.
Awareness is important as a doctor may not diagnose someone with PANDAS / PANS, instead they may misdiagnose the person with Tourette's, just OCD, Autism, FND, Bipolar Disorder, ADHD, a psychotic disorder, an eating disorder etc. This means that people can't get the appropriate treatment that will set them free.
There are many people out there living with PANDAS / PANS who do not know they have the condition(s) as a doctor can't or won't diagnose them. This is heartbreaking. By raising awareness, people may hear about PANDAS / PANS from a friend or online which means that they can seek a diagnosis and treatment from a PANDAS / PANS specialist.
Many people with PANDAS/PANS do not respond to, or have severe side effects from traditional psychotropic medications that are usually effective for OCD, tics, depression, psychosis etc. As well as this, people with PANDAS/PANS may not see as much benefit from therapy such as CBT as their psychiatric symptoms may be so severe or the neurological symptoms may prevent them from being able to utilize the strategies they have been taught.
For those who luckily do respond to therapy and psychotropic medications, they do not target other symptoms such as an increase in urinary frequency, coordination changes, dilated pupils, academic and cognitive decline, developmental regression, personality changes, speech changes, complex sleep disturbances, brain fog, rigid thinking and some other neurological symptoms.
This is why access to the appropriate treatment is vital. It could change someone's life beyond measure or even save lives. PANDAS / PANS / BGE awareness is vital.
