Morgan Stevenson, like many women in their 20s, enjoys using social media — but when she makes TikTok videos it's to raise awareness of her rare genetic condition.
The 28-year-old from Rockhampton lives with Williams syndrome, a condition that affects one in every 10,000 people worldwide.
Growing up, Ms Stevenson said not many people knew about the condition, and she often had to explain it to support workers and teachers.
Now she's on a mission to change that.
"People don't really understand what it is and how to help someone who has it," Ms Stevenson said.
"People with Williams syndrome just want to make friends with everyone and to be accepted for who they are as a person."
Williams syndrome is caused by the deletion of genetic material from the long arm of chromosome seven.
According to Williams Syndrome Australia, the development disorder can affect many parts of the body, leading to various medical problems, and is characterised by a distinctive facial expression.
"They're great people to be around, very caring and thoughtful and sociable," the group's director, Dianne Petrie, said.
She said little was known about the condition among the general population, and more research into its impact on adults would be welcomed.
Raising awareness
The organisation said people with the condition typically also had difficulty with visual-spatial tasks such as drawing and assembling puzzles.
Although it affects everyone differently, for Ms Stevenson, it meant she was incredibly social when she was younger, but was also sensitive to loud noises.
"We can come across as too overly friendly …[but] as I grew up, I grew to understand it a lot more," she said.
People with Williams syndrome can develop numerous health problems, such as hypercalcaemia, which affects the health of bones and teeth — something Ms Stevenson has suffered with.
"I had a lot of teeth issues," she said.
With the month of May being Williams syndrome awareness month, Ms Stevenson, who works three days a week at a local supermarket, was motivated to share her story.
"I think it would make life easier if people understood … [and didn't] talk down to people that have disabilities," she said.
"I've had that done to me a lot."
More research needed
When Ms Petrie's daughter Natasha was born with Williams syndrome in 1982, she said "nobody had heard" of it.
Her experience prompted her to help formally set up the association in 1985, and she said "a lot more paediatricians" were aware of Williams syndrome now than were when Natasha was growing up.
But while some studies on how the condition affects children had been done, Ms Petrie said more research into its effects on adults was needed.
"The health conditions change as they age … there are other issues that come in," she said.
"It would be great if there was a good body of research done on that.
"Quite often I get calls from carers in organisations because they haven't heard of Williams syndrome, and they want tips on how to deal with [it]."
She said the organisation had put a $100,000 donation it received towards research on the condition by Macquarie University.
Ms Petrie said she would also like to see more investment in genetic clinics, to reduce wait lists for those seeking a diagnosis.
A spokesperson for the Queensland health department said its Genetic Health Queensland sites across the state provided clinical genetic services including diagnosis, counselling, and management advice to referred individuals and families.
The federal health department said it had invested $420 million into its Medical Research Future Fund, established in 2015, to provide grants to support medical research.
In a statement, the department said it had also committed a further $750 million over the next 10 years to the fund’s Clinical Trials Activity Initiative, with the money to go towards paying for clinical trials research into rare diseases.
