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    Why won’t she tell me?

    Yesterday my psychologist texted me and asked if she could meet with me and my parents during my next appointment. I asked why via text, a voicemail and another text today; she still hasn’t told me. The suspense is driving my anxiety crazy. I don’t know if it has something to do with a journal entry I wrote about my family or if she is gonna retire on me, maybe has a serious or terminal illness, wants to commit me. I don’t know and my mind will not stop throwing conclusions at me. I feel so drained thanks to this suspense and my allergies. I can’t concentrate on anything amd I still have a few chores to do and I have NO desire. Why won’t she tell me? #anxious #AnxietyAttack #Aspie #Depression #ADHD #Dyspraxia #Keratoconus



    #Keratoconus I am also surprised at the lack of posts here as well. I was diagnosed in college. I have been wearing the piggyback lens system since 1998. My vision in my right eye is getting worse do you suggest a transplant? How has it been for you if you’ve had one?


    Ocular Manifestations of EDS #EhlersDanlosSyndrome

    I have to get glasses for the first time today. Doing last minute research because the severity of my poor vision changes

    I came across this at the link included. There us also a kindle unlimited book (by I think the same author. If you have KU you can borrow it, if not it is 2.99
    Ig coveres these issues in more depth

    How do I know glasses will help / prescription will stay the same if blurriness levels change?

    Common symptoms
    Doctors and EDS patients must not assume that their symptoms are always due to their EDS and are therefore unactionable. For example, even among the EDS population, the number one cause of fluctuating vision is diabetes.

    Blurred vision that comes and goes;
    difficulty in accommodation
    • Diplopia (double vision) out of one eye, or with both eyes open
    • A change in depth perception, especially when looking to the side that may be intermittent
    • “Photophobia” (light sensitivity) • Complete, or almost complete, loss of vision in one eye that lasts a few minutes; migraine auras, scintillating scotomas
    • Visual “snow”
    • Dry eyes
    • Tunnel vision
    •Floaters (EDS patients have more floaters than the general population)
    • Flashes of light or a curtain over the vision •
    *Vision that is not fully correctable with glasses or soft contact lenses. (Doctors should perform corneal topography on all patients with unexplained blurred vision.)
    • Myopia (nearsightedness) that increases quickly •
    • Deep eye pain that seems to have no ocular cause (it may be due to venous pressure on the branches of the trigeminal nerve -- the fifth cranial nerve in the cavernous sinus – and can thus exhibit intermittently).


    High Myopia
    In Ehlers Danlos Syndrome, however, the corneas are often found to be fairly flat, meaning that the near-sightedness is due primarily to elongation of the eye.6
    Early symptoms of keratoconus include vision that just doesn’t seem as clear to the patient as it should be – even with use of new glasses or soft contact lenses. It is usually worse in one eye than the other.
    Diagnosis of
    Lens Subluxation
    Angiod Streaks
    Dry Eyes
    Macular Degeneration
    Posterior Staphyloma
    Carotid-Cavernous Sinus Fistulas


    Checking in #Keratoconus #PellucidMarginalDegeneration

    Hi peeps! Just checking in with anyone who has #Keratoconus or #PellucidMarginalDegeneration - how are you coping with Covid ito not touching your face ie eyes and not being able to visit the optician. #itchyeyes

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    Corneal Transplant

    Had my first corneal transplant on Monday, all is going well and I'm starting to get a bit of vision back in the eye, as well as awesome looking stitches

    See full photo

    KC and Photophobia

    Like many people with keratoconus, I have extreme photophobia. I have tried so many sunglasses and it just never helps, and then I end up with the equivalent of a UV burn in my more sensitive eye. Low and behold, REI has sunglasses that are spectrum rated for climbing glacial mountains. They protect the sides of my special eyes, and make me look like I’m auditioning for a role as a dastardly sky pirate. 🤷🏻‍♀️😂 #Photophobia



    Has anyone here had corneal transplants for their keratoconus?

    I'm having my first corneal transplant next month and am starting to get slightly worried as I didn't react well to crosslinking. Does anyone know if the recovery from the transplants is similar to the recovery from crosslinking?


    I'm surprised this community is so small, I thought Keratoconus was a lot more common 😣