4 years on...
Nearly this time 4 years ago I had CXL treatment on both eyes, a year after I was advised that the condition had stabilised however I had not been contacted for a check-up since. I decided to get referred to Moorfield’s Eye Hospital as they have a clinic for those who suffer with KC and ensure patients are seen annually.
I received the great news that the condition has not progressed and after having CXL it should be stabilised. There are no answers to how long CXL could stabilise keratoconus, for all we know it could be forever!
Whilst waiting to be seen by an optometrist, I was invited to take part in the clinical and genetic basis of keratoconus research study. I was advised this would be voluntary and all that would be required is an eye examination (which I was in the middle of having done anyway) and to give a 20ml blood sample. The laboratory will extract the DNA from the cells in the blood sample so that it can be used to study the genes.
Research has shown that genetic factors have an effect of the risk of someone developing the disease and this study would give the opportunity to see if genes that affect the risk of keratoconus could be found.
So far, just over 2,000 patients with keratoconus have volunteered and once they have 3,000 patients DNA the study will be carried out.
Finding the genes is a major challenge and may take many years but to speed up the research they may join forces with other research teams in the UK or abroad.
When receiving this invite, I did not hesitate once and accepted to become a volunteer immediately. We are in control of keratoconus, it will not control us!