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Old 07-06-2020, 03:27 PM   #20
Minnie
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Join Date: Dec 2012
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Originally Posted by Knut View Post
Ivabridine is known to cause vision effects (halos on lights, blurry vision etc) but typically only in the first few months and it usually goes away if you stop.

EDS is a collagen disease and 80% of the eye is collagen. So it can be affected. The cornea is the place this happens most commonly. Some types (like Type VI Kyphoscoliosis) will affect it more. We watch for Keratonconus in EDS patients.
The kid says thank you. The EDS dx came just this past August (so almost a year) after finally seeing a geneticist - I think when she saw you initially, a few years back, they were talking some different forms of arthritis but now we know it's hEDS. Genetics is now also looking at a metabolic disorder, but she's still in the investigative stage of that. The Ivabridine is being used by her cardiologist to deal with POTS/IST (known EDS comorbidity). He upped her dosage a couple of months ago, so I think she's seeing an increase in the blurry vision due to that, though the blurriness has never really abated, even on the lower dose. She had an eye exam in August & got glasses but I believe the doc said she wasn't seeing any particular issues she was concerned about - the EDS dx had come just the day prior, so we made sure to mention it to the doc at the top of the appt.
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