UK Keratoconus Self-Help and Support Association

Just a thought

How bad is Kerataconus compared to other conditions anyone can get ? I appreciate we are all different and cope different but let’s say an a person wearing RGP lens each day

Difficult question I know

if you are able to weara and tolerate lenses you are damnn lucky, I wish my sight was able to be solved by wearing glasses, but it can't and I use a long cane cos my KC has left me registred as severely sight impaired (legally blind)

but disability isn't a game of top trumps and nor is sight loss so I don't really see the point of what you are asking

It’s just a question

I think it’s quite hard to quantify. Every illness is debilitating in its own way and the effects will also be difficult.

I have quite mild KC to the extent I don’t really need glasses most of the time but it’s still had its own negative effects.

It’s a question I don’t really know how to answer!

I think like most conditions it's a very wide spectrum regarding severity of progression, success of surgery/lenses/longer term failure/complications, how it impacts, experience of services, pain, so many factors.
For some people it's a minor inconvenience, for others it's been hard but ultimately ok, through to life changing in the negative.
Even when a lens or 2 can be tolerated for X hours with good 'clinic vision', it's still might be no picnic. 'Clinic sight' is not the same as outside sight ie technically I could drive with my 1 eye but I would crash within days if I tried because grit or mucus under the lens is a daily, streaming, wincing, event, looking out of the other duff eye would be a disaster, and removing a lens, waiting for it to settle, wash hands, clean lens, reinsert, wouldn't be viable in a car. I also couldn't say to a driving examiner 'well it's either an O, C, or Q', being asked what the license plate is, so that's fine for clinic but not a driving test. Ive been physically assualted at a bus stop for staring at the indicator as I couldn't move closer, because the person thought I was staring at them. I've been screamed at a few times for this reason, and had more misses with traffic than I can even count because of photosensitivity.
I have good vision in 1 eye with an RGP on an old graft, but I live in fear of losing that. The wear time and reslilience to tolerate multiple reinsertions is not what it was. The other eye has a macula hole, failed re-graft, awaiting DMEK and cataract, and I know that I wouldn't want to live with SVI in both eyes on a permament basis. I experience significant anxiety.

I wouldn't want to compare KC to other ophthalmic conditions though, some are serious and horrible but don't take sight or leave SVI, others don't. I have an auntie with macula degeneration and she is blind, it's very distressing to her. I'm grateful to have more sight than her.