Advice needed

[Mandie]

Hi, I am a parent of a 19 year old son who has last week just been diagnosed with KC. We have just had our first consultation and are due to go back to Addenbrookes hopsital in Cambridge on 3rd February to the contact lens clinic. We were told that until his check up in July they cannot really provide us with any more information re his condition until his eyes have been assessed further. I have read all sorts regarding KC and I do understand what KC is etc, I just need to hear some "friendly" advice as to how I can support my son and what I can do for him. He is in his third year apprenticeship at college as a trainee plumber, therefore driving etc is a big part of his working life. Please let me have any advice that you feel I/we need.

Mandie

[Andrew MacLean]

Welcome to the forum

Hi, I am a parent of a 19 year old son who has last week just been diagnosed with KC. We have just had our first consultation and are due to go back to Addenbrookes hopsital in Cambridge on 3rd February to the contact lens clinic. We were told that until his check up in July they cannot really provide us with any more information re his condition until his eyes have been assessed further. I have read all sorts regarding KC and I do understand what KC is etc, I just need to hear some "friendly" advice as to how I can support my son and what I can do for him. He is in his third year apprenticeship at college as a trainee plumber, therefore driving etc is a big part of his working life. Please let me have any advice that you feel I/we need.

Mandie

Don't panic

Your son is at an early stage of a condition that may not develop or deteriorate very much at all. If the worst case arises, then help will be at hand. I have KC, have had cornea grafts in both eyes, have a full time job and apart from some time off work at the time of my first transplant, I have not had a single sick day because of KC. I drive; indeed one regular contributor to the forum drove in competitions for many years.

Let us know how your son gets on in February. they will probably try to fit contact lenses and if that works he will be amazed at the improvement in his sight. If there is a problem then there are several different types of lens and lens materials that are available for people with KC.

Every good wish.

Andrew

[Accuvision Optom]

Hi Mandie,

Welcome to the Forum!
Since your son has been recently diagnosed, I would suggest the next step is to find out how far the condition has developed. Every keratoconus patient is diagnosed at different stages and only by regular monitoring can we know if the condition is stable or progressing. Often there are distinct differences between each eye aswell. The best way to assess this, is to have corneal topography and corneal thickness measured in addition to the standard prescription. This can be done at the hospital or a by specialist optometrist. It is advantageous to do this as early as possible because there are usually more options available during the early stages of keratoconus.

All the best,

Anthony

Accuvision
Laser Eye Clinics

[Sweet]

Hi there and welcome to the forum!

I hope that at his first consultation in Feb they will do a topography scan which will show them how advanced the KC is and if it affects both eyes. This is a good base line for future care as he will be able to tell if it is getting worse. KC does stabilise, my right eye has been the same for about 10 years and I manage very well with lenses.

Please don't worry too much which is easy to say I know. There are loads of lenses and surgical interventions which do help so much. In the early stages a lot of people can see very well with glasses, your son will just need to get tested to see what can be done.

Wishing you both the best, do let us know how you get on! Love Claire X x X

[MCONWAY]

Hi

I was 17 when my eyes changed over night so can totally understand the horror/frustrations that your son probably feels and if i am honest my mum probably feels guilty for thing she has passed some dodgey gene onto me! I am nearly 40 now and have been through various diffent ridgid lenses over the years after struggling with glasses and soft lenses - it took them years to work out i had other issues going on! I think that the only advise i can give to you is research as you seem to be doing and to join him on his hospital visits (if he wants!)as i have found that people dont REALLY understand what its like however much they think - such a hard ship having to wear glasses afterall! I now have a son of my own and am terrified of him developing it so I can also understand what it must be like seeing your son with the problems. The ridgid lens have pretty much sorted me out since they do take some getting used to and are not always that comfortable esp if tired, only now are my corneas getting very thin are we thinking about these new INTACTS, although my vision with lens' is good by my standard (probably not for mainstream eyes)!
The lenses do take some getting used to ansd alot of eye drops help. I would reccomend though that when he does get them that he does try taking them out whenhe can - not easy i know with alot if late nights out! Also suggest he asks for a back up pair of lens' as they doo tend to pop our like tiddly winks!

anyway thats about it im afraid, be there when he gets frustrated and try to really understand. My mums been great.

If anyone has any advise we the intacts thing i would be grateful as i really nervousabout doing this, is it worth it whilst i have fairly reasonable vision with the lens' ? just seems that my corneas are getting very thin.

MC

[Andrew MacLean]

MCONWAY

Welcome to the forum!

Why should your mum feel guilty about your KC? It may be that there is a genetic component to KC, but there is hardly any fault on the part of a parent who unwittingly passes on the tendency to develop KC.

All the best.

Andrew