Picture looking at the world through a lens that blurs, clouds, and distorts everything you see. This is a daily reality for many individuals with keratoconus.
Keratoconus is an eye condition that changes the shape of the clear front part of the eye, called the cornea. This makes the cornea become thinner and bulge out in a cone-like way, which can distort how you see things.
November 10 is World Keratoconus Day, a global day to increase awareness and education about this condition. Connective tissue disorders have been linked to an increased risk of keratoconus as they can cause weakening of the cornea. In the 2017 Ehlers-Danlos Syndromes (EDS) International Criteria, keratoconus is described as a specific feature and complication in Brittle Cornea Syndrome (BCS) and vascular Ehlers-Danlos syndrome (vEDS).
In addition, a 2021 study, looking at genetic causes of keratoconus found abnormalities in COL5A1, TNXB, and ZNF469, all genes known to also cause EDS. In 2022, a review summarising the more common eye concerns found in EDS was published, Ehlers-Danlos syndromes and their manifestations in the visual system.
Virtual Support Groups
Let’s Chat
Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?
Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.