UK Keratoconus Self-Help and Support Association

My son, aged 16, saw optician 12 May 08 and was prescribed glasses for reading. At the time she mentioned he may have another problem but didn't go into details but said she'd reassess in 12 months. Having examined him again in August she wanted an immediate appointment with a particular consultant but due to holidays and her not wanting me to see his locum we go this Wed. She "mentioned" KC but gave no details, I got the feeling she didn't want to alarm me. I have since spoken to another opticion who said from what I related that it is probable he has this condition and to get as much information as I can before the appointment.

Well I have never heard of this before and have been searching the internet. My question please is what questions should I have ready to ask, there is nothing like seeing a consultant, at huge expense, only to discover afterwards that there are questioned unanswered.

Thanks in advance

Welcome to the forum. I know that this is scary, but I am sure that all of us who have been through the process would echo the advice: Don't Panic!

Questions to ask. I guess that your son would be interested to know how advanced his Keratoconus is. There is a scale and if the doctor says "moderate", or anything else for that matter, a next question might be "Where does that come on the scale?"

Most people with keratoconus never progress to need any intervention beyond wearing contact lenses. Your son may also want to ask whether he needs contact lenses now, or whether the ophthalmologist will refer him to a contact lens clinic. Many hospitals have clinics of their own, many others have an arrangement with a KC specialist high street optometrist.

If the ophthalmologist begins to talk about surgical options (and remember that he may not), then your son may want to know about INTACS (a procedure whereby little semi-circles of clear plastic are inserted into the cornea to help to flatten it), or even Crosslinking.

All the best. Tell your son that he is not alone.

Andrew

Very sincere thanks for your response. I have just realised from reading your post that I actually haven't yet sat down with my son and talked to him about this oops. My fault, he is very quiet and holds everything in, will try and draw him before Wednesday.

Thanks again

Whereabouts are you from? you mention about " seeing a consultant, at huge expense". In the UK we are lucky (or not depending on your view point) to get KC appointments through the NHS, so the advice that Andrew has given is applicable to the NHS rather than any other system. Some of us do go private for treatments as some are very new on the market so to speak.

It is probably a good sign that you optician wants you to specific person, as I have had appointments within my local hospital eye clinic with doctors that dont know the first thing about KC - I know more about it than them which is a bit scary. So by your optician wanting you to see a specific person he probably has a good understanding of KC.

Some questions to consider are;
1. How advanced is the KC?
2. What is the consultants knowledge/experience of the condition and treatments? - especially if you are paying for the service
3. What treatments are available and suitable for your son? some newer ones in the UK are Intacs and Crosslinking/CXL (still at trial stages on the NHS), along with the traditional contact lenses for sight. A lot of people manage with different types of contact lenses all their life, others can not cope with CL at all, others go past the stage of being able to wear CL and require a graft (usually a lot later in life mind you), others manage to cope with glasses all their life
4. Is there a likely progression and what speed? this may be a question for later in the treatment, when the consultant has seen your son over a period of time as each person generally progresses at different rates - it is called a bespoke condition by a lot of people because what applies to one person wont apply to the next.
5. Is it in both eyes or just one at the moment? (as i understand it, KC usually develops in both eye - 12 years on it has only just started developing in my second eye)

Read some of the literature that is available and take it with you, both on this website and on the web in general. Some of that will answer some questions but it may also generate more questions for you as well.

At the moment there is no "cure" for KC, but as mentioned above some people manage perfectly well all their lives with glasses or contact lenses (i personally am managing with glasses as the KC has only just developed in my right eye at late 20s, left eye was diagnosed with KC about 10-12 years ago and i can not get a comfortable fit in contact lenses). Others end up requiring a graft (later in life is more normal for this).
Intacs is a couple of pieces of plastic inserted in the cornea that helps smooth the cornea out to enable easier fitting of contact lenses or glasses. Intacs are available at a limited number of locations on the NHS in the UK.
CXL is a relatively new procedure (still at the trail stage on the NHS, but available privately in the UK) which is meant to slow/stop the progression of KC.
Both of these procedures have their limits and will not cure KC/improve vision on their own, but may assist in being able to manage with glasses or a more comfortable fit with contact lenses.

It's probably too late to get anything to you for Wednesday, but if you e-mail your postal address to anne@keratoconus-group.org.uk I can put our basic information booklet about KC in the post to you, along with the DVD of our 2007 conference, which covered all the current treatment options. Might help with questions at future appointments!
All the best for Wednesday.
Anne