Question

[mdx317]

hi my son is 19y.he was diagnosed Keratoconus last year.and tried different lens since last year.and the pressure in his left eye has been increaasing.we met the consultant today.and decided to schedule for cornea graft in july.and they said his right eye is also progressing and will need cross linking.but not available in NHS yet.do you have any advise how can the pressure progressing.will going to the gym and lifting affect his eye and he uses his computer a lot.he will be in university this september.I hope his graft is healed that time.

[Anne Klepacz]

Hello and welcome!
Weight lifting will definitely be off the menu for a while after your son has had his corneal graft. Whether it's likely to be affecting his eye now I don't know - maybe someone here is more expert and can advise. The eye will have healed by the time he goes to uni, but how quickly people get any useful vision after a transplant varies a lot - anything from 3 months to over a year. There is a leaflet on the home page of this site about supporting students with KC which you can print off and give to your son's uni if he needs any extra help for the first few months. Unis are pretty good at providing extra help these days.
Crosslinking is available on the NHS at a few hospitals in the UK, though not yet at Leicester. If you'd like our information booklet about KC, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you some information.
Anne

[Grant]

[quote="Anne Klepacz"
Crosslinking is available on the NHS at a few hospitals in the UK, though not yet at Leicester.[/quote]

That's interesting. I have an appointment with one of the consultant's at Leicester on Thursday, I'll ask why and whether he thinks it may change any time soon.

[Anne Klepacz]

Thanks Grant, that would be very useful. I had hoped that the revised guidelines on CXL that NICE published last autumn would mean more hospitals would start offering this on the NHS. But so far it doesn't seem to have been happening, though if any forum users know their hospital is offering CXL, please share this information with us so that we can let members know. So far we know of St Paul's in Liverpool, Royal Hallamshire in Sheffield, Moorfields in London, Royal Victoria in East Grinstead and possibly also Bristol and Sunderland?
The NHS reforms mean that CXL now comes under 'specialised commissioning' by NHS England. In theory, this should mean that there is equal access to CXL on the NHS throughout England. I've been trying to find out from NHS England how the new system is supposed to work, but so far without any success.
If any forum users have any more information, please let us know!
Anne

[CrippsCorner]

I probably already know the answer to this, but seeing as though I have my second CT scan this month, it's on my mind atm... if I am eligible for CXL, can I get referred to Moorfield's from my hospital in Essex to get it paid for on the NHS?

[ne1960]

Further to the above post I've had kerarings and crosslinking on my left eye at St. James Hospital in Leeds.

Neil.

[Anne Klepacz]

Many thanks for that, Neil.
And Cripps, yes, you should be able to get referred to Moorfields if you need CXL though I think your home area may have to agree to fund it.
Anne

[GarethB]

When you get reffered to a hospital you can choose where you go so it may be that the hospital in you area wouldn't need to fund the treatment.

Going back to the original post about starting University shortly after a graft, I did this 25 years ago before people had home PC's! My graft was in the July and I started to study a Microbiology degree in the September and I was registered partially sighted at the time (other eye was so bad unable to get a lens to stay in my eye) I started university. The university were made aware and we discussed what help I needed and they were very supportive. The RNIB helped with the purchase of a cassette tape recorder that could accept a tape that ran for 120 minutes but could "split" the recordng side in two so that 240 minutes of lectures could be recorded. I would then transcribe the notes carefully by hand so that I cold read them at a later date. As my lectures included many diagrams, the lecturers would make me aware of where in the lecture the diagram was relevent and after lectures we would go and copy them and I had to pay for the photocopy. The detailed practicles where a magnifier was no use were deffered until the second year where I was partially sighted in one eye (the other eye was grafted in the summer break between years 1 & 2) but full vion in grafted eye number 1 and I carried on like any other student and completed all the detailed first year assessments.

Things are very different as PC's are common place, any university I go to with work, all students have laptops or tablets which all have the ability to record lectures and all lecturers presentations are given using multimedia so now these can be emailed if needed.

The important thing here is communication between student and university so they are aware of any potentiual issues and so between you a program can be put in place which hopefully will only be a temprary measure until your son has decent vision again.

[mdx317]

thanks everyone for the information.I will let my son know about this.i will keep you posted.

[CrippsCorner]

Many thanks for that, Neil.
And Cripps, yes, you should be able to get referred to Moorfields if you need CXL though I think your home area may have to agree to fund it.
Anne

Okay, thanks... I'll update if I need to!