Also important in building the toolbox is that you go at your own pace – a recommendation she emphasizes.
“I always open the door (to patients) and say there are resources, and I always ask the patient, ‘Do you want to know more about the resources?’ And if they say no, I write in the card that they are not ready yet and try again later.”
Other tools include special apps like seeing AI narrate the world around you by pointing your smartphone or iPad’s camera at something. It can help with reading currency, naming colors and deciphering handwriting. Another example is Be My Eyes, which connects visually impaired people via a live video call with sighted volunteers for help with tasks.
In addition, there are screen readers that provide audio descriptions of the content on the screen, various magnification tools and smart glasses that provide audio descriptions of the environment and assist with reading and navigation.
3. Understand the symptoms of IRD
Being aware of your IRD symptoms will help you feel better prepared for what is to come and what may be needed.
As Chorfi notes, “Everyone needs to understand that hereditary retinal diseases are on a spectrum, so no one will have the same course. I tell patients, I don’t expect you to wake up one morning and suddenly be completely blind. This condition doesn’t work that way. It’s a slowly progressive condition. It lasts for years, and I always tell them they were born with it.”
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