UK Keratoconus Self-Help and Support Association

Hi,

I have just been diagnosed with KC, which came as a bit of a shock, as I have only been wearing glasses for just over two years. I have few concerns and really the best people to ask would be you guys, so I was wondering if anyone could put my mind at ease,

I have only been wearing glasses for two years and already have been diagnosed with KC, I have been told to stick with corrective glasses for now, but in the future obviously I may need to have the contacts and maybe a graft. I know each case in individual, but my eye sight has decreased quite rapidly in the past two years - is there a time scale for when, I may need contacts or when I may need an operation?

Are there any reasons as to why you would contract KC? I can easily say the past two years have been the most stressful years of my life so far (am only 22) but finals at Uni and numerous family members dieing have all contributed to my stress - are there any links with stress/lifestyles etc? I am an asthma and hayfever sufferer which may be linked I believe? Are there any further details on the link between allergies and KC?

I would like to know other peoples experience with who they have seen with regards to treatment/eye tests etc - has it all been through the NHS or have people used private facilities? Does anyone have any recomendations? I have only been seen by NHS doctors/consultants but at the time of diagnosis I was not informed of the condition properly and no time was taken to put me at ease, which I feel is quite important, yes it is not life threatening but it's important people go away understanding what it is they have and how to manage it effectively.

My biggest fear is having an operation - silly as it may seem! Is the operation done by local or general anestetic? How long does it take? What's the success rate? How often may you need to go back and have another one done?

My eye sight is generally not too bad, if I am just wandering around the house, I feel like I do not need to be wearing my glasses, as everything up close is clear, it is just writing and computer/tv's I need my glasses for, am I making my condition worse if I do not wear my glasses when I feel like I don't need them, will I be putting on unnecessary strain to my eyes? I don't want to become dependant on my glasses, as my eye sight is not that bad at the moment, I know it will decrease but maybe it is just me being resistant to acceppting I have to wear them all the time?

On a positive note, this web site is fab, it has set me off on a few tangents regarding work environments and having read some of the forums It is clear that their is a good network of support here and I am glad i have found it, and I would appreciate any advice, guidance as to the above questions/worries! (sorry I banged on a bit there!)

I look forward to hearing from you, and thank you in advance for your time.

Thanks Claire

Hi Claire

And welcome to the forum

---------
........ - is there a time scale for when, I may need contacts or when I may need an operation?

No, there is no time scale. The KC may remain in its current state for months/years, than increase, or it may just stay the same....its completely unpredictable.....however you will notice it getting worse by your vision decreasing
---------
Are there any reasons as to why you would contract KC?

No, there are many theories, and alot of "questionable" data towards the cause of KC, but noone can conclusively say why it occurs
-----

I can easily say the past two years have been the most stressful years of my life so far (am only 22) but finals at Uni and numerous family members dieing have all contributed to my stress - are there any links with stress/lifestyles etc? I am an asthma and hayfever sufferer which may be linked I believe? Are there any further details on the link between allergies and KC?

Yes, do a search on this forum and you will find experience from other sufferers of the above...
-----

I would like to know other peoples experience with who they have seen with regards to treatment/eye tests etc - has it all been through the NHS or have people used private facilities?

Swings and roundabouts - End of the day, both routes lead to the same consultants/CL fitters in alot of the cases. However "you get what you pay for" applies if you want to be seen faster and treated more professionaly end-2-end than Private is usualy the better option. NHS is full of red tape, stats, and focus less on patient care. I dont mean that the consultants are this way; its just the mode and method of delivery is NOT for the patients interest.
-----

Does anyone have any recomendations? I have only been seen by NHS doctors/consultants but at the time of diagnosis I was not informed of the condition properly and no time was taken to put me at ease, which I feel is quite important, yes it is not life threatening but it's important people go away understanding what it is they have and how to manage it effectively.

Well, if you have mild KC that does not Progress than NHS is fine. If you get to the stage where it progresses fast and you cant afford to wait for the 6 monts+ appts than Private. If you are wealthy and can afford it, than Private is the way to go; in my opinion..as the delivery of the treatment is based around you.
----------

My biggest fear is having an operation - silly as it may seem! Is the operation done by local or general anestetic?

Both, but in UK General seems to be the one thats used the most.........however only around 10-15% of people with KC need a transplant.

How long does it take?

45 mins to 2 hours depending on the type of Transplant..and assuming its a transplant

What's the success rate?

90/95% - however these stats are graft successes from a consultants view.A patient view may be more focused around Vision attained post op
-----

How often may you need to go back and have another one done?

Depends, if its successful and no problems you will need to see the consultant for about 6-10 times in the first year. If you have a rejection and its caught in time you may not need another graft. Its just soo hard to say......The "life" of the graft is also another unknown...some have lasted 5 years, some have lasted 35 years +

-----

My eye sight is generally not too bad, if I am just wandering around the house, I feel like I do not need to be wearing my glasses, as everything up close is clear, it is just writing and computer/tv's I need my glasses for, am I making my condition worse if I do not wear my glasses when I feel like I don't need them, will I be putting on unnecessary strain to my eyes? I don't want to become dependant on my glasses, as my eye sight is not that bad at the moment, I know it will decrease but maybe it is just me being resistant to acceppting I have to wear them all the time?

Well, thats a question only you can answer. As you are wearing glasses its "easier" to cope with KC. If you can operate without them for various tasks; hey thats fine. If it increases you will know as your vison WITH the glasses will deteriorate.......
----

On another note, there are now so many treatment options for KC that its now a "good" time than ever to have this condition.........as much as that sounds bad!......new lenses, new treatments, etc are all being performed with great sucess!...........

Hi Claire,

In trying to answer your questions, some specialists can come across very alarmist! It is also worth remembering that KC can stabalise as quick as it starts and that very few of us ever get to the point where we need grafts. Admitedly most rely on contact lenses of one sort or another and some are fine with glasses.

Regards

Gareth

Hi Claire, and welcome to the forum.

Just to follow on from Jayuk's excellent post, I've actually had 6 rejection episodes since having my graft 3.5 years ago; but another graft hasn't really been discussed.

Instead, I'm taking steroid eye drops to manage the rejections (and at a lower dose as a preventative measure) and each time after a few days I'm back to normal!

As Gareth states though, a graft really should be the last resort. There's a whole range of weird and wonderful contact lenses to go through before you should really consider a graft. Good as grafts are, if you have one and it goes wrong that's that. It's much easier and risk-free to try another contact lens type than to undergo a re-graft.

All the best,