Almost 2300 Australian children are living with the debilitating effects of childhood dementia.
And, according to studies, less than five per cent of the disorders causing the dementia have a treatment while most of the children will never reach adulthood.
Worldwide there are 700,000 children and young people living with dementia.
Dementia is typically a disease associated with ageing and researchers say many people are surprised to learn that it can also afflict very young children.
February 28 is Rare Diseases Day and researchers at Flinders University in Adelaide are hoping the day will help to focus attention on rare disorders like childhood dementia.
Associate Professor Kim Hemsley leads the Childhood Dementia Research Group in the Flinders Health and Medical Research Institute at Flinders University.
The team of medical researchers is working to identify and test treatments for childhood-onset dementia.
“People are surprised and very saddened when I tell them that unfortunately yes, children get dementia too. It’s typically associated with ageing,” Prof Hemsley said.
She is hoping the attention focused on Rare Diseases Day can help to spread the word and gain wider public attention for rare disorders and the work undertaken by the Childhood Dementia Research Group.
“Rare Diseases Day is an important international campaign that aims to raise awareness of what it means to be rare,” said Prof Hemsley.
She said childhood dementia is one of the most surprising rare diseases to the public. There are more than 70 different genetic causes of dementia in children.
“The aim of our work is to develop treatments in the lab and see them move into the clinic so that these children and their families can have a normal life.”
Sanfilippo syndrome, which is an untreatable form of childhood-onset dementia, is one of a group of about 70 inherited conditions which collectively affect about one in 2800 children in Australia, making them more common than cystic fibrosis and other better known diseases.
Prof Hemsley said the research work fits with the key message of Rare Diseases Day 2021 which is: Rare is many. Rare is strong. Rare is proud.
“We encourage everyone to take part in this campaign, because awareness leads to empowerment and with the whole community supporting action, we will move further down the path to finding crucial medical solutions.”