UK Keratoconus Self-Help and Support Association

we may all have KC we are all affected differently by it.

Amen to that

I dont think anyone is lucky if they are diagnosed with KC, a debilitating progressive eye disease. Your case Space Cadet is one of the most extreme I have read on here which everyone who is contemplating a corneal transplant should read. You have been so unlucky but you are an inspiration to the KC community and also your daughter.

Although you might be able to drive now you may not be able to drive in the future.

There is one fact for sure, that if you are one of the unfortunate ones whose KC progresses to the point were the only option is a corneal transplant thats when you realise how vulnerable you are - at work in everything you do as people are ignorant of the disease as its an invisible disability to them.
No medical recognition no white stick. Thats why there is a need for a new sight registration for KC, as it would provide the protection that the current legislation The Equality Act fails to provide for KCers

This charity should be campaigning for two things for KCers
1. as soon as KC is diagnosed that patients be offered CXL on the NHS
2. a new sight registration for KC

Sadly it is not.