UK Keratoconus Self-Help and Support Association

Hi my name is dhiren, i have been suffering from keratoconus since i was 13 im 22 now. I have had a corneal graft in my left eye and still continue to wear RGP's in both left & right. I am a patient at moorfields eye hospital in london. I am also a studying optometry in aston university in birmingham.
Just recently i have been given the task of writing my disertation/elective study and i have chosen to write about keratoconus. Im really excited about it.
Here's the problem, i need to come up with some titles i can present to my lecturers in the hope that they will accept it. so far i have the following:
1. keratoconus and contact lens wear. includes treatments, prognosis and management.

2. Complications involved with treatments

3. How treatment varies in the uk and the usa

I really really need more suggestions so that i can be gauranteed it, this is where i need your help. if you have any suggestions no matter how far fetched please email them to me dhiren_nak@hotmail.com
I would be delighted to share the finished product with anyone that is intrested.
Please please please help me!

I would also be delighted to help out in the production of the leaflet, please keep me posted on whats happening. thank you!

dhiren

*DEE-LITE*


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hi its me again. I just want to add, if there is anything related to keratoconus that you are intrested in learning and would like to know more about then email me. maybe i can use that to think of a title that will help us all!
thank you.

dhiren

Hi Nicola,
Thanks for your offer. What would be helpful would be details of how you were supported, what worked for you. Look forward to hearing from you.
email is janetmanning@lineone.net

Hi Dhiren,
What you need is a research question. What do you want to find out about KC? Your research could be very useful to us all. I suggest you use a questionaire, to which I'm sure lots of us on this site would respond. You have a captive and highly motivated audience on this discussion page - use us!

One suggestion. (I'm sure you'll get more!!)
Keratoconus: Patterns in disease progression and treatment.
You could design a questionaire about age of onset/diagnosis, visual acuity at that stage, compared to age now and visual acuity.

When designing the questionaire remember that we won't all have exact details of visual acuity. You might have to think up a common sense measure eg. could you recognise someone across the street without glasses/lenses.

How good is the correction with glasses/ lenses + similar measure. eg. can you watch TV comfortably across the room, can you drive, what size font can you read comfortably. Do you use reading glasses as well as lenses?

Do you use glasses/ lenses (type?)
How long are lenses worn each day?

Any allergic conditions? How does this affect lens wear? How are allergies treated?

Incidence of hydrops

Grafts - one or both eyes?

In this way from your sample, you could build up a pattern of how the disease progresses and what treatment is received. I don't know how big your dissertaion is, this might be too big a question.

It might be better to concentrate on one aspect in detail. eg.
The control/treatment of atopic conditions in KC. (the control/treatment of allergic conditions such as eczema and chronic allergic conjunctivitis and the interaction with this and lens wear.)
or you could look at Outcomes after grafts in KC.
or The incidence and management of hydrops in KC.

Sorry I've gone on a bit - got carried away!
I've just finished my own dissertation for my Licentiate in Homoeopathy so I'm still in dissertation mode!
Best of Luck Janet

I am the new person looking for some kind of support as I do not know where to go from here and will appreciate any help and advice from you wonderful people out there going through this thing just like I doÂ… I am 28 haven’t had a graph, wearing new contacts that will kill me before I’m 28 and a half so I have to rely on my glasses. I am a student studying MCSE, CCNA and MCSA but much but I am a hard worker. I am sure it is the primary cause of my discomfort.

I need to talk to people that had the graphs or just people that can help. My email is nicowkotze@yahoo.com

Well, we saw Mr McDonnell on Monday afternoon (after getting caught with a broken car, hailed on, missing the train from Bromsgrove to Brum etc). anyway, long story short, we now have it confirmed that Gareth has KC. Still a shock...He thinks it makes him more interesting, saying `I've got something Latin wrong with my eyes'. I suppose I'm grateful he's not petrified, because I am quite frankly. I'm scared for him, as he's so young, and Mr McDonnell said it then has longer to get bad than if someone develops it in their twenties, say (therefore more possibility of surgery). all in all, not what I wanted to hear, when he already has ADHD, asthma, and multiple allergies.
When I rang our BOOTS optician to let him know, and thank him for spotting it, he said it was rare to see it, and even rarer in his age child ( he had never seen one under 16). At the moment Gareth's right eye is only in the very early stages, and is compensating for the left. What happens when he needs lenses etc? DO we get vouchers as he is a child?

Hey Dhiren!

I've also had a graft. I'm also studying at Aston. Drop us an email on my uni address - my username is davea1.

Hi. I am interested to find out if anyone has any info on any type of laser treatment AFTER their corneal grafts? Please get in touch urgently.

Dhiren and anyone else who is interested. It might be worth your while contacting Marine Gobbe she has just started a study on the acuity of KC patients, with the hopes of eventually improving soft contact lenses to be more suited to those of us with KC. Information can be found on the main menu page. It has a revolving "new" sign next to it.
Nico I will e-mail you.

Has anyone have any independant comments to make about the new soft lens called KeraSoft from Ultavision.

Nisah

I have had a graft - April 2001 - and it has been technically very successful. I have a lovely clear graft and no signs of rejection. I am though very short sighted in my grafted eye. When it came to having lenses/glasses fitted I was told that I might not be able to tolerate the vast difference between the vision in my good eye and my grafted eye, and that the shape of the graft could be altered by minor surgery. In fact I have coped well with the difference, best with cl but glasses are ok. I think this surgery would have been laser surgery. The eye surgeon was reluctant to do it though he admitted to being disappointed at my short-sightedness.

Frankly I did not care as long as I could tolerate lenses/glasses! I can see! That is what counts. I can drive work etc.

keep healthy Freddy