Keratoconus Support Group
Keratoconus is a degenerative non-inflammatory disorder of the eye in which structural changes within the cornea cause it to thin and change to a more conical shape than its normal even curve. Keratoconus can cause substantial distortion of the vision, with multiple images, streaking and sensitivity to light all often reported by the patient.
Well I have had vision issues since i was 20 but was told it was far sided-ness and never questioned why my glasses never seemed to work well. I am now 50 and a software engineer (impossible to get through the day without a headache, sore eyes or stress) I have just been diagnosed from a very shocked doctor that was amazed that he was the first to explain this to me.
I went to him since i cannot read the plates of the car stopped in front of me anymore and I sometimes cannot tell what something is until it is close (why is there a monkey on that fence... oh it was a rose bush).
I have had one fitting with contacts they only made my reading clear but worsened my distance, so we have ordered another pair. I hope these work.
My concern is that I cannot get anyone in my family to understand that there is an issue "you don't appear to have an issue". So I get stressed and alone especially watching TV , a Movie or just watching the cows pass by; because i cannot see well enough to grasp what is up and ask for a description.
SCARED LONELY AND WORRIED. Needing some support that understands this.
I went to him since i cannot read the plates of the car stopped in front of me anymore and I sometimes cannot tell what something is until it is close (why is there a monkey on that fence... oh it was a rose bush).
I have had one fitting with contacts they only made my reading clear but worsened my distance, so we have ordered another pair. I hope these work.
My concern is that I cannot get anyone in my family to understand that there is an issue "you don't appear to have an issue". So I get stressed and alone especially watching TV , a Movie or just watching the cows pass by; because i cannot see well enough to grasp what is up and ask for a description.
SCARED LONELY AND WORRIED. Needing some support that understands this.
Lens fitting takes time. Our eyes are no longer shaped normally.
In regards to providing some understanding to your family, that is something that is difficult to share. They cant see the issue, as what you see is the issue.
There are some images of simulated the visual distortion associated with Keratoconus on the Keratoconus Wikipedia page (https://en.wikipedia.org/wiki/Keratoconus). I would suggest you share them to start.
I get your blight. It is like my own.
I like bradpw's idea, to have your family look at those images. I tell people it's like looking through a soap bubble, but that doesn't even come close to explaining the halos, auras, ghosting, and other bizarre symptoms of keratoconus.
I've posted about my recent experiences with scleral lenses, and I encourage you to ask your doctor about them. Please, try not to worry... you aren't alone, and if you find the right doc and the right lenses, your vision will improve.
I just joined the group today. I went to my eye dr for what i thought was going to be a routine eye check for a new prescription. i have been having major headaches and migraines for 9 months, and i keep having lumps on the back of my head behind my ears swell up like marbles. I am just sick of it and my vision is so blurry.I have trouble driving at night. I can't read a computer screen or my dang iphone. everything has to be very LARGE. I have had issues with my left eye swelling at times and feels like it gets stuck or the muscles are very tight and the eye doesn't want to move back into position after I look up or to the sides. But I have had Optic Neuritis back in 1995 and 1997 so i just thought it was an inflamed optic nerve and it goes away after a few days. This diagnosis of keratoconus was a shock today. I am only 46 and just had my eyes checked exactly a year ago with hardly any change in prescription then. Today was a massive difference from a year ago and my dr told me this was abnormal to have this much change unless there was something else causing it. Then he examined me further and i was really having trouble seeing today. The exam only irritated things and left me with weird images of shadows and shapes and more blurriness. It was the worst after he used the slip lamp. Then he told me he wanted me to do further testing to measure the curve of my eye. SO we set that up for May 29th. What concerns me most after researching this eye disease is how fast the lost of vision has progressed in one years time. I cannot wear contacts because of the swelling i get in the left eye ball. I don't want to go blind. Does anyone know how fast this can progress and do we actually end up blind? I am so scared .
Often I found that only others with the condition, understood the condition. Even though they knew I had it, because I didn't look like I couldn't see, they did not know the extent to which it affected me. I found that it helped to bring some of them to my appointments from time to time. I let them come back with me and watch while the doctor had me relay the letters on the chart. Once they saw that I could not even decipher the biggest letter they had, their perception of it changed. They also got to learn about the other symptoms: light sensitivity, poor depth perception, etc.
Well wishes.