how KC affects your life?

[GarethB]

Many that post feel they have reached a point where continueing is very difficult in their life. Therefore as a group I feel we do not represent the KC community as a whole. Having said that I know the people on the forum are keen to help, these guys turned my life round 2 years ago and helped me find ways to cope that I had never even contemplated. With their help and encouragement I got over my depression which I receiving councelling for (I was off work for 3 months) and I have adapted my work place and taken on tasks I never thought I had an aptitude for. The guys on this forum have helped me overcome many issues which why I now feel that KC has very little impact on my life. This has alse resulted in me being a prominent poster on the forums as I feel the need to repay to the KC community all the help they gave me which is beyond any monetary value.

This is why in the chit chat area I posted about my promotion because without the guys here I would never have made it back to work or tried to make a success of my life again. It is thanks to those here that I have achieved in the past two years what I have.

Familly are the best support we have and it is hard for them to understand what we go through. As a support group we are there for them too.

Wishing everyone who is finding living with KC difficult to say the least all the best and we are here wanting to help in any way we can.

Regards

Gareth

[asylumxl]

dunno if theres any point to me posting her, but my right eyes pretty damn bad vision wise. it doesn't really bother me though, my left eye makes up for it most of the time.

the only time it gets me down is when im shaving and i cant see the right side of my face.... its a small thing but it gets me down.

[Lisa Nixon]

There is no doubt about it, KC is tough. I don't drive after dark and I've not worked for 4 years. But I'm now a Riding for the Disabled instructor, teach once a week locally which I probably wouldn't have done. Grafts have definately made a huge difference, definately not a quick fix but I've got most of my life back. The hardest part for me is that my son has KC and it's my fault. His left eye is ok but he can no longer read the chart with his right eye and is about to start trying contact lenses. I would gladly give up my sight so he doesn't have to go through this. He is 26 and expecting, or rather his partner is! their first baby in a week or so. I'm praying that the baby doesn't have KC.

[GarethB]

Lisa,

My understanding is that KC can go to the next generation, but this is not common so you should not be blaming yourself. The presentation at the AGM showed even fewer cases of KC going to a third generation.

Remember technology is ever moving on so if your son is only starting with lenses the choices of lenses and KC treatment are far greater than they were when I was first diagnosed 20 years ago. I am sure in another 10 - 20 years there will be even more advances to help us cope easier with KC so it becomes far less of an impact on our lives.

[Claire Harrington]

Wow - some worrying views there it has to be said! I've been diagnosed with KC now for just over a year, I am still in very early stages and wear glasses to correct my vision. To be honest it did effect me at first(mentally and emotionally) To be honest I'm better off when I don't look at experiences of others as they do seem to be negative ones, but maybe I could put a positive spin on things?! I have had the same prescription for over a year now and for me that is a big achievement,(and I'm terrible at not rubbing my eyes!) For aprox 6 months prior to my diagnosis I had multiple sets of glasses made and none of them quite did the job properly so for now, no it does not effect my life, but I feel forums like this are invaluable for those with KC as it gives us all food for thought on our individual conditions!

[Anne Klepacz]

Claire - good to hear your positive story. And of course, there are many more people like you out there. Many people only come to this forum when KC does affect their life - but lots of people with KC get good vision with glasses or contact lenses and find their KC doesn't progress or stays stable for many years. The trouble is, they don't post here so it's easy to get KC out of perspective by looking at the forum! And for the minority of us who do go on to have a graft, the outcome is usually very good, even if we do sometimes have to battle with a few setbacks along the way.
Anne

[GarethB]

Claire,

This will give you further hope, my KC has been stable for over two years now. So yours being stable for a year is good news.

[Lisa Nixon]

Thanks Gareth. You've made me feel a lot better.