Ehlers-Danlos Syndrome and Eye Health: Conditions, Risks, and Care Tips
- Cordova Bay Optometry
- Sep 10
- 4 min read
Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders caused by defects in collagen — the protein that provides strength and elasticity to skin, joints, blood vessels, and the eyes. Because collagen is critical for eye structure, people with EDS are more likely to experience certain eye conditions.
Today we will explore how EDS can affect vision, which symptoms to watch for, and why regular eye exams are so important.
Ehlors-Danlos Syndromes (EDS) are a group of 13 heritable connective tissue disorders. Represented here are common signs and symptoms of Classical (cEDS), Cascular (vEDS) and Kyphoscoliotic (kEDS) subtypes. The most prevelant subtype, Hypermobile EDS, occurs in approximately 1 in 5000 and represents 90% of EDS cases. source: https://www.ehlers-danlos.com
Common Eye Conditions Associated with Ehlers-Danlos Syndrome
Keratoconus and Corneal Thinning
In EDS, weakened collagen can make the cornea (the clear front part of the eye) thinner and more flexible. This can lead to keratoconus, where the cornea bulges into a cone shape, causing:
Blurry or distorted vision
Increased sensitivity to light
Frequent prescription changes
Treatment options In the initial phases of keratoconus, vision issues can often be corrected with glasses or soft contact lenses. As the condition progresses, you might need to switch to rigid, gas permeable contact lenses or scleral lenses. If the condition worsens, a cornea transplant might become necessary. Corneal collagen cross-linking is a procedure that can help slow down or halt the progression of keratoconus, which could potentially eliminate the need for a future corneal transplant.
Progressive Myopia (Nearsightedness)
EDS patients are more prone to high myopia because the eye can elongate more easily. This not only affects vision but also increases the risk of:
Retinal detachment
Macular degeneration
Glaucoma
Routine eye exams help track prescription changes and catch complications early.
Retinal Tears and Detachments
Fragile retinal tissue in EDS means there is a higher chance of:
Retinal tears (small breaks in the retina)
Retinal detachment (when the retina pulls away from the back of the eye)
These conditions require urgent treatment to prevent permanent vision loss. Some symptoms of retinal detachment include:
Flashing lights
Sudden new floaters
Shadow or "curtaining" appearing in your vision
If you experience any of these symptoms, contact your eye doctor immediately.
Ocular Fragility
Vascular EDS, in particular, can make blood vessels in the eyes more fragile, leading to:
Frequent subconjunctival hemorrhages (burst blood vessels on the whites of the eyes)
Higher risk of bleeding with trauma or surgery
Dry Eye Syndrome
Collagen changes can reduce tear film stability, leading to:
Burning or gritty sensation
Light sensitivity
Difficulty wearing contact lenses
Fluctuating vision
Excessive tearing reflex to irritations
Visit our Dry Eye Management section to learn more about treatment options for dry eyes.
Glaucoma
Glaucoma is a disease that damages the optic nerve, a bundle of nerve fibers that serves as the communication cable between your eyes and your brain. This typically occurs when fluid accumulates in the front section of the eye, raising the pressure and subsequently damaging the optic nerve.
Glaucoma is a potential manifestation of of Ehlers-Danlos Syndromes due to the collagen defects affecting the eye's structure, leading to issues like scleral fragility and altered intraocular pressure.
Glaucoma generally progresses slowly and frequently lacks early symptoms. However, in its later stages, it may manifest as a gradual loss of peripheral (side) vision, blurry vision, halos around lights, and eye pain or redness.
Blue Sclera
Some EDS patients have a bluish tint to the sclera (the white of the eye). A blue sclera, while typically harmless, can be a visible clue to a more serious problem as it can result from genetic disorders such as osteogenesis imperfecta (brittle bone disease), connective tissue conditions like Marfan syndrome or Ehlers-Danlos syndrome, severe iron deficiency anemia, or certain medications.
Others include:
Lens Dislocation (Ectopia Lentis)
Floppy Eyelids
Neurological and Secondary Effects:
Ex: migraine-associated visual aura, papilledema from Chiari malformations, and prolonged concussion recovery affecting vision.
Downward-slanting eyelids
Periorbital dark circles
Carotid-Cavernous Fistula
Macular Degeneration
Strabismus (eye turns)
Convergence Insufficiency
Cervical Artery Dissection,
which impacts the blood flow to the brain and may manifest with a range of signs and symptoms such as diplopia, blurred vision, temporary visual obscurations, nystagmus, Horner syndrome, reduced corneal sensation, and visual field defects
Why Regular Eye Exams Are Critical for People with EDS
Because many of these conditions progress silently, yearly comprehensive eye exams — or more frequent if recommended — are essential. Your eye doctor may suggest:
Corneal topography to monitor corneal shape
OCT imaging to check retinal and optic nerve health
Dilated eye exams to look for weak spots in the retina
Takeaway
Eye health is a vital part of managing Ehlers-Danlos Syndrome. With regular eye exams, early detection, and proactive care, most vision problems can be managed before they cause lasting damage.
Sources:
Asanad S, Bayomi M, Brown D, Buzzard J, Lai E, Ling C, Miglani T, Mohammed T, Tsai J, Uddin O, Singman E. Ehlers-Danlos syndromes and their manifestations in the visual system. Front Med (Lausanne). 2022 Sep 27
Kim, S.B., Shaia, J.K., Kaelber, D.C. et al. Ocular manifestations in Ehlers-Danlos syndrome. Eye 39, 1990–1997 (2025)
Malfait, F., Castori, M., Francomano, C.A. et al. The Ehlers–Danlos syndromes. Nat Rev Dis Primers 6, 64 (2020)
The Ehlers-Danlos Society https://www.ehlers-danlos.com
The American Academy of Ophthalmology https://eyewiki.org/Ehlers-Danlos_Syndrome
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