CAMPAIGNERS are raising awareness of a condition so rare that treatment for it does not widely exist in Ireland.
It means people and their families must leave Donegal to go abroad for help with the autoimmune disorder.
Its full name is Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections or PANDAS for short.
PANDAS is a specific type of condition within a broader condition known as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).
PANS is a condition defined by a sudden onset of obsessive-compulsive disorder.
PANDAS is a specific subtype that medics believe is triggered by a Group A Streptococcal (strep) infection, such as strep throat or scarlet fever.
They say that it typically starts between age three and puberty.
Donegal parents with children who have PANS and the subtype PANDAS will tomorrow (Friday) mark PANSPANDAS Awareness Day.
The first ever PANS PANDAS Awareness Day urged local authorities like Donegal County Council to light up green. Photo: panspandasuk.org.
A spokesperson said: “Many buildings in Ireland and the UK will be lighting up green, including Donegal County Council offices included.
“We are delighted about this. Families in Donegal and across Ireland have to travel regularly to London, as treatment is limited or virtually non-existent in Ireland.
“Awareness is essential in order to enhance the provision of health care and treatment for children and young people with PANSPANDAS in this country.
“Early diagnosis and treatment is so important, so it is important to raise awareness.”
Symptoms of PANS PANDAS have been published to help parents to identify the autoimmune disorder. Photo: panspandasuk.org.
The campaign is asking local landmarks and buildings to light up green for PANS PANDAS Awareness Day across the globe.
The spokesperson added: “This inaugural awareness and fundraising initiative will be a show of solidarity and support to the many families who are affected by PANS or PANDAS.
“These are conditions which are unknown to the majority of the general public and quite often health and educational professionals too.
“Help us to raise awareness and raise funds to offer more support, training and medical guidance by registering.”
Registrations can be on panspandasuk.org to learn more and to donate.