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Re: To all who have joined this forum recently

Posted: Wed 25 Apr 2018 10:02 am
by JillyG15
Hello - looking for advice. We live in Scotland. my son (22 years old) has progressive keratoconus.  He was diagnosed a year and a half ago after he assumed he had 'perfect' vision.  One eye is I so bad that it is too late for cross link.  His 'good' eye had to have cross link 4 weeks ago as it has deteriorated.  I was wondering if you know of any help and assistance available in Scotland in relation to psychological supports. His GP is keen to refer him and asked me to find out if any available as my son is not coping with his current vision loss and is extremely depressed. His consultant said that a corneal transplant for his right eye is almost definite.  His cross link so far looks successful but they will know for sure in June.  His ophthalmologist is hoping that he will have a level of vision with special larger hard lenses if he can adapt and tolerate them in June/July.
he struggled to cope with the last hard lens he had for his ‘bad’ eye as it kept popping out and irritated his eye.  Since he was diagnosed he has been travelling Australia (as a year out had already been his plan) he coped with just a prescription glass for one eye on his glasses (other eye too badly advanced for glasses).
He was previously very active playing golf, MMA, sports  travelling until February this year when he had to fly home due to his vision deterioration that it has affected his confidence badly.  He feels that he only sees ‘old’ people at his hospital and I’m wondering if anyone on here is of a similar age or any tips / advice that would help him at this time.

Thanks in advance.

Re: To all who have joined this forum recently

Posted: Wed 25 Apr 2018 4:17 pm
by Anne Klepacz
Hello Jilly and welcome,
I'm afraid I'm one of the 'old' ones, but it does mean that I've lived with KC most of my life and can remember how depressed I got when my vision was deteriorating rapidly. I'm too old to have had CXL but it's good that your son has had that done in his better eye and hopefully that will stabilise the KC in that eye.
I've also had corneal grafts in both eyes and that made a big difference to my vision (although I still needed contact lenses after the grafts). But he may not get to that stage - the rate of progression in KC is very different in different people and even between the two eyes. The big scleral or semi scleral lenses can often be more comfortable to wear than the small rgps (and they don't fall out). Quite a few of our members use them and much prefer them to their previous lenses. So hopefully come June or July, things will look quite a bit brighter for your son and he will have much better vision. But of course it's hard to have your life turned upside down by a condition that most people have never heard of and particularly at such a young age. And loss of self confidence is something that quite a few of us have experienced when our sight was bad. I'm in London so don't know very much about what's currently available in Scotland in terms of psychological support - other members may be able to help. RNIB Scotland offer emotional support for people in Western Scotland (not sure why it's only one part of the country?) so they would be worth contacting as if they can't help themselves, they might have other suggestions for you. There's also an organisation called Visibility which might be able to help.
The good thing about KC is that there are many more treatment and contact lens options than there were when I was diagnosed many decades ago, and more research into the condition. The way I coped was to tell myself that the problems I was having were temporary and that there were things that could be done. Not always easy when you're in the middle of it and every month of waiting for things to improve seems for ever. But it did prove true for me in the end.
I hope some of our younger forum users will see your post and offer some suggestions. And do let us know how things go.

Re: To all who have joined this forum recently

Posted: Thu 26 Apr 2018 3:54 pm
by JillyG15
Thank you so much for replying.

RNIB are going to counsel him. Yeah we are west Scotland. Visibility are in touch with a list of activities. He is out today with his dad for the first time playing golf at range so he will have had to put the contact lens in. Unsure how this has went as not back yet but his dad has planned a full round tomorrow if it goes well. Ironically it was playing golf a year and half ago that he discovered he could not see the ball
Landing and led to a trip to the opticians and Specsavers spotted the problem and investigated further.
Yeah he will get there... I think he relied on the ‘good’ eye and forgot (deliberately choose to forget) it might get worse. Having the cross link operation on ‘good’ eye left him struggling with nothing for 4 weeks. He knows he needs to persevere with this lens for ‘bad’ eye to start living life again and hopefully double success in July then maybe even driving again. I think it’s like it’s just hit him whereas I cried a lot a year and a half ago.

Re: To all who have joined this forum recently

Posted: Thu 26 Apr 2018 6:02 pm
by RedOnion

Just read the post. I'm maybe a little older than your son (I'm 34) but I was diagnosed with the condition last year and have a good and bad eye though both have KC in them, it's just more pronounced in my left (in my right, I bizarrely have almost perfect vision except for starbursts at night). I'm up in Scotland too, though north east, so probably don't have the same range of services.

In terms of treatment, I've received CXL in both eyes and whilst it's stabilised the condition, I've not had any significant change in vision though it is slightly better. I've been given glasses which have no real prescription in the right eye and the left has enough to allow me to read properly without strain. This is all great for during the day but doesn't help with starbursts. For nights, I've been given a single hybrid lens for the left eye which has eliminated the starburst but I'm now getting the a blur effect around the lights (it's hard to explain!) so I'm at the stage where I am going to need to get it reassessed. They tried lens for my right eye but it seems to overcorrect and I actually can't see out of it! I have an optometrist appointment coming up so I'll see what options are available to me.

In terms of the depression aspect, I completely sympathise. I'm a professional driver and last year after my first CXL appointment, when the vision was really bad, I nearly entered a bad phase of depression (I've had it before and know what the triggers are now and how to combat it, it's not an easy thing to do) due to the various factors of "will I still have a job?", or "will my vision come back?" It's a horrible set of thoughts that start going through the mind and it's all to easy to say "remain positive."

I think the best advice is that there are options on the table which may work and to stay the course. The lenses might take some getting used to and probably a degree of trial and error before a solution is found but something will work. I'm really not sure what services exist but as mentioned above, if RNIB are running something then there's no harm in investigating it. Fingers crossed it all works out :)

Re: To all who have joined this forum recently

Posted: Sun 24 Jun 2018 5:32 am
by KARY-1983
Hi my name is Karina I am a parent of a 19 year old that was diagnosed with this condition at the age of 11. I am in need of information, my daughter is going thru a lot of depression. She had an incident with her contacts and she has been without them for almost 2 months. She is legally bling without contacts. We have medical and somehow I call the insurance and I was informed that they approve 2 sets of contacts but the doctor never has give my daughter 2 pairs. I asked her about the cost before so she can avoid this emergencies and she has denied a second pair. My daughter is suicidal and has attempted to take her life due to this emergency without contacts. I would like to know is this normal? Can I hold the doctor responsible to this episodes my daughter is undergoing fue yo the lack of providing her a second pair or even providing her information to obtaining a pair sooner than 2 months? Please help

Re: To all who have joined this forum recently

Posted: Sun 24 Jun 2018 2:41 pm
by Anne Klepacz
Hi Karina,
I'm sorry your daughter has had so much distress. Waiting 2 months for replacement lenses isn't normal for corneal rpg lenses (though it might be different for some of the more specialised lenses such as sclerals). But whereabouts are you? I'm asking because here in the UK medical insurance doesn't normally cover contact lenses, so I'm wondering if you're outside the UK?

Re: To all who have joined this forum recently

Posted: Sun 24 Jun 2018 9:20 pm
by KARY-1983
Hi I am in Los Ángeles California.

Re: To all who have joined this forum recently

Posted: Sun 01 Jul 2018 3:18 pm
by SophiaG
Hi everyone!

I live the US and unfortunately, not much is discussed out here about KC. I 'was diagnosed with KC about 30 years ago. Back then they didn't even have a name for it. Anyways, I've been able to manage with soft contacts until I reached my mid 30's and early 40s. I had CXL in 2013 (it was still not approved by the FDA so I went under a case study program. Had to pay $5,000USD out of pocket since no insurance here covers the procedure). I had a really hard recovery from CXL. The surgical lens came off and the pain from the procedure was the worst thing I've experienced. I ended up in the Emergency Room at 1:00am and needed to be heavily sedated until the hospital could contact my eye surgeon the next day. Much to my disappointment, after the painful ordeal and 6 months of ongoing contact lens fittings, my KC continued to progress.

Now in my mid 40s my eyesight has deteriorated so rapidly that just 12 days ago I had Intacs inserted into my left eye. The process was painless and quick. I did noticed my severe astigmatism improved immediately after surgery. The following morning after the procedure, I met my Dr for a quick check up and I did mention that I could see the ridge of the intact. He sort of dismissed the comment and said everything looked fine.

Now, 12 days after the implants I still see the Intacs as other patients have commented. I don't see it all the time, it just depends on eye movement and how the light reflects on them.I notice them more when I'm wearing my glasses. I have a follow up appointment on July 9th to remove the suture at which time I will discuss with my Dr in full detail to try to understand what to expect moving forward.

Re: To all who have joined this forum recently

Posted: Sun 01 Jul 2018 8:55 pm
by RedOnion
Hi Sophia,

Welcome to the group! Sorry to hear that the CXL didn't work, I'm lucky mine did though it hasn't corrected anything (well an extremely minor improvement is all) but it doesn't seem to be progressing. I'm interested in how you get on with intacs, it's something I'm looking at exploring as having trouble with contacts but need to discuss with a professional.

Good luck with the follow up and hope all goes well!


Re: To all who have joined this forum recently

Posted: Fri 18 Oct 2019 4:21 pm
by Strela10
Hello everyone,

I'm Olivier from Belgium, and I've registered an account on this forum because my 17 year old niece has recently been diagnosed with KC; I'm the one creatingthe account as she and her parents don't really speak English, while resources on it are scarce in French and Flemish. They (the parents and the girl) are going to do what they can with what the doctor says, but she (the niece) is really lost and I figured I should look for people with that issue online to show her that there's hope and that life can get better!

And if I can get some info about how to handle it ineveryday life, it'd be great.

Have a nice day!