Telethon grant supporting families navigating early-stage type 1 diabetes
Thanks to the generous support of West Australians, new funding from Channel 7’s Telethon Trust will help develop a much-needed clinical pathway to support families with kids who have early-stage type 1 diabetes (T1D).
Congratulations to the Rio Tinto Children’s Diabetes Centre’s Dr Aveni Haynes and her team on being awarded funding to work alongside kids and their families, to better understand what support, education or tools they need to help manage the early stage T1D journey.
T1D is the most common type of diabetes in children. 1 in 300 people in the general population are affected and for those who have a first-degree relative living with T1D this goes up to 1 in 20. In Western Australia, about 150 children are newly diagnosed with T1D every year.
Dr Haynes, who leads the epidemiology diabetes research at the Centre, based at The Kids Research Institute Australia, said new research advances – such as screening programs - have resulted in the ability to identify children early in their course of T1D before they have any symptoms or signs and are likely still feeling well.
“Identifying the early stages of T1D can occur months to years before kids become unwell and will need to start insulin. As research advances continue, such children may be able to be offered future treatments to slow the progression and delay the need for daily insulin treatment,” Dr Haynes said.
“While some families want to know whether their child has early-stage T1D so that they can prepare and be informed of research or clinical trials available for early intervention, this is still alarming news for many families to come to terms with, and they need to have structures in place to help provide them with advice on what the news means for them and their child.”
“We are really excited about the opportunity to hear from families in our community to learn about their needs and points of view, so we can work towards addressing these in a way that will be most helpful for them.”
Michael Chatterton and his wife Justine are among thousands of Australian families who have had their child screened to see if they have early-stage T1D.
“My family has recently become in the position where we will be directly benefitting from the counselling, support and advice that this project will provide,” Mr Chatterton said.
“My wife has lived with T1D her whole life and it is all second nature to her - I have not and am more of an observer when it comes to her T1D treatment and care. Now that I am looking down the barrel of caring for a young child with T1D, my lack of knowledge is magnified. “
“At this point, we are effectively in limbo – until Alex proceeds to a point where he has insulin requiring T1D, we are in a ‘wait-and-see’ holding pattern with no formal pathway to access support, counselling and advice until he begins treatment.”
“In my mind this is far too late as the diagnosis is life changing and families require as much support and education as possible in order to achieve the best possible outcomes for not only the child, but the other members of the family.”
Dr Haynes said that in the development of a pathway aimed at meeting the needs of families like the Chatterton’s, it is essential that consumers with lived experience are engaged in designing solutions that are acceptable to families and their children.
“We will also engage leading international experts in T1D prevention and screening to explore what, if any solutions are already being used to support families whose children have early-stage T1D, that have not been documented in the academic or grey literature.”
Dr Aveni Haynes and her team of experts will be hosting the first Community Conversation for this project on Wednesday, March 13. To find out more or to register, click HERE