A to Z of EDS: E is for Eye Issues

Eye problems are included in the minor criteria for Joint Hypermobility Syndrome/Hypermobile EDS. Specifically these are drooping eyelids, antimongoloid slant and myopia. However, there are many more eye issues associated with EDS. A very good book on these issues is Diana Driscoll’s Ehlers Danlos Syndrome: Your Eyes and EDS. Again, I am only going to write about eye issues I personally experience.

High Myopia: High myopia, or severe near sightedness,refers to myopia greater than -6. I am right in the cusp of that, at -6.5. I’ve always had bad eyesight, but never realised it was as bad as it is until quite recently. Due to dryness issues, I don’t usually wear contact lenses. And laser eye surgery is not recommended for those with connective tissue disorders. So, glasses are a rather permanent fixture on my face. The only time I have regretted not being able to see well was straight after the birth of each of my kids. It was very frustrating not being able to see their cute faces until after someone had handed me my glasses!

Blue Sclerae: I’ve already written about this.

Floaters: Although floaters are quite common in the general population, apparently they are more common for those with EDS. I used to think it was normal to see floaters all the time!

Noctural Lagophtalmus: This  basically means sleeping with your eyes (partially) open. I didn’t realise I did this until my husband pointed it out. It occurs in EDS because of weak eyelids. Mine only open a little, causing intense dryness in the shape of the exposed area, which the ophalmologist showed me with a special dye. It was in the shape of a crescent. She called it a “Chesire Cat Grin”. All I can do for it is keep putting in the eye drops. Though it has been suggested I wear a sleeping mask, but I don’t find that comfortable.

Lateral Canthal Dystopia: This used to be, and often still is, called Antimongoloid Slant. This refers to a certain eye shape, where the outer canthas is higher than the inner canthas. Which basically means your eyes droop in the ‘opposite’ way to someone with Down Syndrome. It can be very subtle, and lead to a more ‘almond’ shape. I’ve attempted to show this in a photo of my eye. Again, this is very difficult for me to do so apologies for the poor image! You can’t really see the slant too well, but the general almond shape is there. (And I think you can see a blue tinge to the sclera?)


[image of an almond-shaped eye, with a light coloured pupil, and a faint blue tinge to the sclera]


Dry Eyes: Many of us have Dry Eye Syndrome. Sometimes this can be caused by meds we take, eg antihistamines, amitryptaline. Other times it’s due to things like the Noctural Lagophtalmus I mentioned above. But quite often it can be another annoying symptom of EDS, with no obvious reason. Generally we rely on a lot of eye drops!

So, there you have it! The eyes are yet another body part with lots of symptoms caused by EDS.


[image of a cyan background, with the following words in black: E is for Eye Issues]



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s