Welcome to the Frequently Asked Questions (FAQ) section of UsherKids Australia! We understand that navigating through information about Usher syndrome and its impact on children, young people and families can be overwhelming. That’s why we’ve compiled a comprehensive list of common inquiries to provide clarity and support. Whether you’re seeking information about the diagnosis process, educational resources, or coping strategies, our FAQ section aims to address your concerns. Explore our curated responses to gain insight into Usher syndrome and discover valuable resources tailored to support children and families affected by this condition. If you don’t find the answer you’re looking for, feel free to reach out to our dedicated team for personalized assistance via email at info@usherkidsaustralia.com or via the contact page.

What is the difference between an Ophthalmologist, Optometrist, and an Orthoptist? 

When it comes to your child’s eye care, it’s important to know the distinct roles of ophthalmologists, optometrists, and orthoptists. These professionals play unique yet complementary roles in ensuring the health and functionality of your child/ren’s eyes & vision.

Ophthalmologists: Ophthalmologists are medical doctors who specialise in eye care. They are trained to diagnose and treat a broad spectrum of eye conditions, ranging from common refractive errors to complex diseases. Ophthalmologists can also perform eye surgeries, but not all will. Think of them as the Ear, Nose and Throat (ENT) equivalent for eyecare.

Typically, once your child has been diagnosed with retinitis pigmentosa (RP) or Usher syndrome, they will be referred to an ophthalmologist who will provide ongoing monitoring and management of your child’s vision and eye health.

Orthoptists: Orthoptists are allied health professionals with a university qualification who typically work in the same clinic as ophthalmologists. Your child may see an orthoptist as a part of their regular ophthalmology appointments, often doing some preliminary visual measurements and putting drops in your child’s eyes in preparation for further examination by the ophthalmologist.

Your child may also see a different orthoptist outside of their regular ophthalmology appointments for functional vision assessments.

Optometrists: Optometrists are also allied health professionals with a university qualification. They examine eye health, as well as prescribe and fit glasses or contact lenses. They can also give advice on visual problems. If RP is detected, they will refer to an ophthalmologist for further investigation and management.

For older children and teens without a genetic diagnosis of Usher syndrome they may be the first eye professional to identify evidence of RP. Optometrists mainly work in private practice but can also work in health settings such as hospitals, government and community organisations, and low vision clinics. They can be thought of like the general practitioners of eyecare – able to detect eye disease and manage milder conditions, but will refer to an ophthalmologist for medical management of conditions such as RP.

Costs

In Australia, ophthalmologists are typically accessed through the public health system or private practices. Initial consultation fees at private practices can vary but will include a Medicare rebate.

Orthoptists seen outside of an ophthalmology appointment for assessments are typically funded through a child’s NDIS plan and quotes can be obtained prior to your child’s plan reviews.

Optometrists’ fees in private practice will vary depending on the type of appointment and testing done. Medicare rebates are available on testing & private health insurance may cover some out-of-pocket costs related to glasses and contact lenses. Some practices will bulk bill children.

Choosing an Ophthalmologist

When choosing an ophthalmologist for your child look for someone with paediatric experience who also has experience with Usher syndrome or RP. Be mindful that your child will be seeing their ophthalmologist approximately every 12- 18 months for ongoing monitoring so it’s important that you and your child feel comfortable and well supported by them. If you need assistance in finding an ophthalmologist near you, please contact UsherKids Australia at info@usherkidsaustralia.com.

Does my child need to see an ophthalmologist if they’re young and their vision hasn’t changed?

Yes. It’s important to link into an ophthalmologist when you find out your child has Usher syndrome so baseline measurements can be taken. It’s also important that a child sees an optometrist or ophthalmologist as soon as possible to rule out any other common eye problems that are unrelated to their Usher syndrome diagnosis (i.e. refractive errors).

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