Researchers from the Department of Ophthalmology at the University of Auckland are putting out a final call for people to get their eyes checked – which may save their vision.
By early March 2020, the project team hopes to have signed up 200 people in a study to find out how common keratoconus is in New Zealand. The disease causes progressive vision loss due to the thinning and bulging of the cornea, which is the clear protective covering of the eye.
In 2017 the team tested 98 athletes with Down syndrome at the Special Olympics National Summer Games in Wellington. They found that as many as one in three had keratoconus.
The results inspired the Keratoconus in Down syndrome (KIND 21) project – the first research of its kind in New Zealand. So far, the KIND 21 team has provided comprehensive checks for 100 people.
Optometrist Joyce Mathan, who is working on the project for her PhD, says the team wants to draw attention to this screening, now that corneal collagen cross-linking treatment is available. She says the aim of the study is to provide evidence about keratoconus in people with Down syndrome and then to raise awareness among individuals, families and support people of the need for regular checks.
Heather Reynolds, a registered nurse and member of the KIND 21 team, says the treatment that is available now is miraculous. She says that in the past people could lose their vision and the only treatment on offer was a corneal graft, using donated corneas. “A corneal graft is end-stage treatment,” Joyce says. “This can be avoided by timely corneal collagen cross-linking.”
The optimal age for screening is between 10 years and the early to mid-teenage years. The study is open to anyone with Down syndrome 10 years or older, living in New Zealand and able to express agreement to participate. An assessment to detect keratoconus is provided as well as a general vision and eye health assessment. Participants and support people will be told if keratoconus is detected.
Follow-up visits may be needed to monitor the cornea for changes if keratoconus is present.
If change does occur, a referral for corneal collagen cross-linking will be provided. This is the standard treatment used to slow down or stop keratoconus from progressing. The treatment is fully funded through the public health system.
Because this study is part of a PhD project there is no charge for the appointments. The assessments are held at the University of Auckland, but if there is a need for follow-up treatment, this can be done locally. The project team also includes Dr Samantha Simkin, Dr Akilesh Gokul, Professor Dipika Patel and Professor Charles McGhee – all from the Department of Ophthalmology, University of Auckland.
To find out how you can take part, please contact Joyce Mathan at email@example.com
Photo caption: Joyce Mathan (right) and Heather Reynolds with a KIND 21 study participant.
This story was published in Community Moves. The magazine is posted free to all IHC members.