UK Keratoconus Self-Help and Support Association

Hi all, im new on here, been diagnosed with KC for about 2 years and im 25

I went for a consultation this morning and the doc mentioned this new treatment. Not available on the NHS (£600/eye) Apparently, its not a 'cure' rather a way to stop the cornea degrading any further. Apparently, non invasive, Vit B drops and ultraviolet light bond the Collagen in the cornea making the structure much firmer.

Question is, anyone done it? or know anything about it?

Also, as a side question. Doe snayone get help from the NHS with reagrds to new glasses etc?

Hi Mike- welcome.
I don't know much about it- but I think the treatment you are talking abou tis also known as collagen crosslinking or CXL... have a search through the forum for other topics.
I can't answer about the NHS though...

mikex101

Welcome to the forum. I think Melissa is right and you have been told about CXL. This is a new procedure that enables surgeons to attempt to stabilize the cornea by binding collagen into the stroma.

The stroma is the middle part of the cornea. It is made of collagen, and in KC the cornea becomes thinner because of collagen depletion. CXL does not cure KC, neither does it remove the cause of KC but I think that the evidence is that it is an effective way of managing the condition in some patients.

The procedure is that they (normally) peel back the surface cells of the cornea (epithelium). Sometimes this is 'hinged' with a slight vacuum above the eye holding the epithelium away from the cornea, like an open hatch. Riboflavin is then dropped onto the surface of the stroma and bonded into the structure of the cornea with UV light. This both thickens and stiffens the cornea.

The epithelium can then be allowed to close again over the eye, or if it was completely removed it will re-grow in a reasonably short time.

I am sorry for this summary, but if you want to read more or more comprehensively then search this site for CXL or C3R (the procedure used to be known as C3R), or type either of these names into your search engine.

As to glasses and contact lenses. All eye tests are free in Scotland, but I understand that you can get relief for eye tests in England and Wales. Also; if you have KC and need to wear contact lenses (still the standard method of managing KC in most jurisdictions), then in the UK lenses are dispensed at the NHS rate of around £50 per lens, although if you need to have a lens replaced within twelve months due to a change in your vision or a deterioration in your condition then the subsequent lens is dispensed free.

All the best.

Andrew

It's now 51 pounds 90 pence. Plus post and packing, if you want it sent rather than having to go to the hospital to get it.
Rosemary

Mike

Yes, this is Collagen Cross Linking they are talking about and this likely to be the treatment of choice for KC in the future once it has passed all the trials etc in this country. Studies so far have shown that it stops KC progression.

You can get sight test subsidy if your glasses prescription is over 10.00DS. If this is the case you can also get a small amount off your glasses.

You can also get a sight test free and a voucher towards your glasses if you are eligible on income grounds. This tends to be rather involved so best going into an opticians and checking with them. Contact lens allowances have been well explained above!

Lynn

Cheers for the replies guys,
Yeah, it sounds like its this CLX thing, Ive got another couple of appointments coming up so ill chat to the consultant a bit more i think.

As for sight tests etc, Im currently getting them done free (im 25, full time work etc) at the hospital, 6 monthly and getting topography done at the same time. The Hospital optician does my prescriptions. Its not so much the cost of glasses etc im arsed about, more the fact im a tight git! lol

Interesting thing about the contacts, £51.90 each! seems steep, wonder how much they are from Specsavers or similar?

Ahhh Mike...

Let me gently disillusion you! If you have keratoconus, contact lenses are a necessity because you cannot get good vision with glasses. You can't get good vision (once your KC has advanced a while) from cheap, commercially available contact lenses either. This is why the Govn't allows a "voucher" towards medically necessary contact lenses which privately could cost anything between a few hundred and a few thousand pounds (if you are talking sclerals!)

Keratoconus is a complex condition and actually, people in the UK are lucky to have lenses available on the NHS at £51 per lens. In other countries, medical insurance does not cover these costs and patients have to meet the costs in full or do without.

Ironically, in some European countries, CXL is now available very cheaply and is less than the cost of dedicated KC contact lenses. Some centres offer intacs/CXL followed by laser tweaking as a permanent solution - though time will tell if this total "package" is absolutely safe.

Lynn

hi I have just had a discussion with my consultant regarding this new treatment.
I had a graft on left eye back in November I am now offically better off as have gained a line! They are considering this treatment for my right eye. explained it that you would go into theatre so as to keep all sterile and you would have anasetic in your eye only.Then you would have ribofalvin drops put in and left to react then for half an hour the eye would be exposed to uv light.I asked if this would feel like being on a sunbed with out glasses he said exactly that!
He then explained that you would have to have a patch for 48 hours and then dark glasses for some weeks fater so as not to expose the eye to light whilst it was healing.
He said that results would be as follows:Would probably halt the progression of KC.In some cases has reversed some of the effects of KC and in 5 cases has left the eye KC free!I have a leaflet which i could send a copy if you want.Also at no point did he mention that there was a cost to the patient i understood it to be free on the nhs.I have to wait the arrival of new baby in august before i can be reviewed again

Charlene

Are you having your CXL on the NHS? I know that it is becoming available in more and more places.

Andrew

I have had CXL in the left eye which the KC was just found in about 8 months ago and i will leave it at i am not happy at all . My right eye is severely advanced to the point where i need a graft . CXL takes aprox 4 months to heal now i have the problem where my brain cannot bring images together so i went 2 weeks with no sight at all not that the sight i have is any good, but i would rather have faceless faces then nothing but grey fog anyday .My graft is scheduled for sept and i have 2 seperate office`s that i go to one for the right eye and one for the left and now i have 2 clinics arguing what type of corneal transplant i should have the old method by hand or the new laser cornel transplant i cannot even get them to return my calls can anyone give me some advice on what i should do . Thanks Rob