Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

Yes, actually! My brother's rare eye issue was first spotted during what he thought would be a routine exam too. He went in expecting a simple prescription update, but the optometrist noticed some changes in his retina and referred me on. After more tests, he was diagnosed with a genetic retinal condition.

What really stood out to me was how important regular eye exams are, you don’t always notice the early signs yourself. The process of getting a clear diagnosis took a bit of time and felt overwhelming at first, but having it caught early gave me options for managing it better.

Hi , I wanted to check back in with you and see how you're doing. Did you get an answer to what was going on with your eyes? Are you being treated? - Warmly, Donna (Team Member)

Hi, !

I know a few of our members have been diagnosed following an eye exam, but some of them were experiencing issues that led them to schedule an eye appointment, so I don't know if you would count that as a regular exam. Here's one conversation from our forums on the topic of eye exams and eye symptoms leading to diagnosis -- https://raredisease.net/forums/recognizing-the-symptoms-of-eye-conditions. Also, we have a sister site dedicated specifically to one rare eye disease (Thyroid Eye Disease) and I wanted to share a member piece from that site that I thought you might find interesting -- https://thyroideyedisease.net/living/self-talk. Managing any rare condition can definitely be a challenge, but it is doable. I do hope other community members see your post and chime in here with their experiencings being diagnosed and treating eye conditions.

Best, Erin, Team Member.