Does contact lens use accelrate KC?

[GarethB]

Hari,

All good links, can you balance it with links which show the opposite?

Showed this thread to a new person at work who knows nothing about KC and all I said was that I had it and I need to wear lenses, then asked for his comments.

He carefully read thw whole thread and said

'Does this mean you'll go blind because of the scarring your lenses will cause to the cornea?'

So I showed this to a few other people and in all cases the reaction was the same. Even those who have known me for many years!

Now anyone new to KC and having been told the need lenses; looking at this thread will quite probably think the same.

All very good and interesting papers however we need to remain objective here and put both sides of the argument.

I'm off home now if the motorway is clear!

[Carole Rutherford]

Ok so I may be thick but can someone please tell me what ark and mini-ark is?

My son is totally convinced that since he began wearing his lenses that his left eye - which was only just begin to show signs of KC - has gotten much worse.

He is now wearing his lenses for 10 hours plus each day.

Carole

[jayuk]

Carole

Dont panic!...I guess this was what Gareth was talking about......

What has been referenced in the above posts are merely studies which have found that wearing contact lenses can POTENTIALLY be bad for KC corneas (in fact this also applies to none KC corneas)

HOWEVER, as Gareth has pointed out; and so did Hari; there are many studies out there which also claim that wearing contact lenses have no bearing on KC progression....so please dont be alarmed from what you had read......we are merely debating whether they are good and bad; and as always there are two sides to the argument.

In relation to your son; Iits virtually impossible to determine whether the progresion of his KC has gotten worse since wearing his lenses, unles of course there really badly fitted (in which case Id doubt hed be able to wear them for even 45 mins!)

Jay

[GarethB]

Carole,

This link might help you; http://www.miniarkdatabase.com

Most optoms will say 10 - 12 hours per day is the max with one day per week to rest the eye.

The weight of the lens can disrot the cone slightly and the time off without a lens is not always enough time for the eye to reach a stable state again so KC appears to be worse with respect to how we see without lenses.

The other thing is our brain gets used to the corrected vision and looses its ability to compenasate as it did before so giving the impression KC has got worse.

I felt this when I first got my lenses, but having has topography done on different machines by different people at different visits to the hospital my KC has remained unchanged for 2 years as prooven by the topography despite the fact I see less without lenses than I did before.

The brain is not as smart as we think.

[jayuk]

"The brain is not as smart as we think."

Speak for yourself and own pal!

[Hari Navarro]

Hello Carole,
Generally speaking... and this is only my personal view... I think there is a tendency by many to opt for the softly, softly approuch when discussing anything outside of the accepted range concerning keratoconus. I think that truthfully the only reason to feel worried about any of the things that we talk about here is when they are not given importance by the medical specialists we trust to treat us.

Support is a very important thing and respect for a patients choice of treatment goes without saying. But also I can see no point in shying away from questioning ALL the treatments that we use. It dosnt matter if its graft, RGP's. Intacs or even ARK... we have to highlight each of these treatments failings as well as blessings if we are ever to fully understand the choices we have made.

In your situation as a mother you have the added stress of suggesting treatment for someone other than yourself. The uncertainty and added focus that you feel toward making the right choice is one that should be shared by every medical professional that has ever prescribed us a given treatment option.

The problems that your son is experiencing are ones that need to be addressed quickly. Its no good to suffer through long days when he knows in himself that the condition is getting worse.
This is why 'hard talk' about our treatments is vital.

You have to discuss all your sons options with his doctor... but in the end it is you (and your son) that has to be able to establish just what the extent is of your doctors experience.
In my case I had a very similar experience with contact lenses... I approuched my specialist about my concerns and pointed out a few studies that i had found on the internet. He dismissed me completely and went on to say that there was no cure for KC and if I didnt want to 'see' then I could always not use my RGP's and stumble around in the dark. He made not the slightest effort to offer anything in the way of alternative (why would he... he was a contact lens specialist).

I have also heard of many in our KC community that have had great experiences with their eye specialists so greatfully this is not hopeless situation. All I would suggest is that you and your son study up and get whoever is treating him to answer your questions.

And you are not thick as ARK mini-ARK is not a treatment that enjoys mainstream publicity...

Basically it involve the placement of micro incisions onto the cornea to create a flattening effect. As these incisions heal they intend to further strengthen the corneal structure.

It worked for me but its not for everyone. Each case must find its specific treatment.

Regards,
Hari

[Carole Rutherford]

Hi Hari

Thanks for your post. Study is my middle name now, as as well as having KC David is also autistic and I am almost up to professor status on that subject. I will be honest and say to you that the prospect of having to begin studying again when autism itself is such a massive subject is not easy. But nor is the prospect of David's eyes becoming even worse when he is a visual person. People with autism rely heavily on what they can see. They are not audio learners.

Again a daft question but where do I begin?

Carole

PS if you read my OT post - Result I had to share this maybe you will understand why I am already battle weary

[Sajeev]

Carole check you Pms, I just sent you one!

[Hari Navarro]

Hi Carole,
Has any previous link ever been made between autism and KC? I have heard of various, mainly connective tissue, disorders being linked to KC but not autism, maybe there is no link?

I briefly had a look around for information and I got an idea of the enormous width of the information out there regarding autism... I guess thats why they call it a spectrum disorder. You have done very well to come to grips with it.

I did find this article (You probably have already seen it)... it was one of the few that spoke of vision disorders as related to autism in children.

Autism and Visual Impairment
http://www.tsbvi.edu/Education/vmi/autism-and-vi.htm

Because of the uniqueness of David's case I really cannot say if mini ARK would be a viable option.
I will contact the clinic that uses this treatment directly and post the replie here.

Regards,
Hari

[Hari Navarro]

I'm not sure if this constitutes a valid link between KC and Autism but I see there has been some research data published regarding chromosome 13 ring abnormality and KC and also separate reports of the same link in Autism:

chromosome 13 ring abnormality in KC
http://bjo.bmjjournals.com/cgi/content/full/84/9/1075d

AUTISM AND RING CHROMOSOME 13
http://www.hkjpsych.com/Autism_ring.pdf ... me%2013%22

note:
Ring chromosomes are caused by breakage of both arms of the chromosome with subsequent fusion of the breakpoints and loss of the fragments beyond the breakpoints. A variable amount of the chromosome is lost, and in ring 13 the severity of the clinical presentation is correlated with the size of the lost fragments.

Hari