Do you get scared?

[Libby]

Hi folks
I thinks this relates to Louise's earlier post - re mental health issues and sensory impairment. Just wondered if any one else gets scared of KC and what the future holds. I get physical symptoms if I think I've lost my trusted right lens . I get pins and needles in my arms and a horrible knot in my stomach. When my husband finds it its like winning the lottery. I feel much more should be done for us at the initial diagnosis and then throughout the coming years to help us to come to terms with our condition, that way new people who are now just being diagnosed would hopefully not feel as alone as I guess most of us did before this forum was set up.
I'd like to thank everyone who contributes to this forum for the support that it has given me since I started posting 1 month ago. for the first time in years I can speak to people who truly understand
Libby

[GarethB]

The only time I would say I got scared was when I got KC part 2 because I have responsibilities now, a job, wife & daughter, mortgage and so on.

You are correct more could be done at diagnoses which is where this group comes in. What I would like to see is a local support group in each hospital so at point of diagnoses, one of the main groups leaflets can be given outlining the facts about KC in a patient friendly manner. On the back would be the main group contact details along with the details of the local group organisers so they can have a chat about KC and what the futer may hold and so they can meet others to know they are not alone.

I feel we are a long way off this, but we are moving in the right direction.

[Matthew_]

Libby,
You are right of course. Its very difficult for people to understand this condition. Especially as our vision varies, good days and bad days. It took so long to get my lenses that I look after them like prized possessions! When I am on my bicycle I wear huge motor bike goggles to catch the lens should it fall out. Looks daft but better than loosing one!

[chrism]

While I can understand how others may feel... personally, I've never really been scared or put down by KC. I know that everyones' experience is different (emotionally, physically, etc) and below is simply what my perspective has been.

I think it has something to do with how I was diagnosed and treated through the years. When my first OD first diagnosed me with KC, it was pretty early on and she didn't make a big deal of it. I was still getting by quite well with glasses and she simply referred me to an ophthalmologist who I would see annually in addition. I knew I'd eventually need contacts, but hey, tons of people wear contacts...

In the years that followed, I simply saw my OD and ophthalmologist yearly, got new contacts (RGP) as needed and besides a few lenses that liked to come off the cornea and the fact that glasses didn't work for me anymore, I got by without any major issues. I just thought of KC as a different type of astigmatism (which is very common) and not as some strange condition. I knew there was a possibility of a transplant, but not until recently has it even been considered. I guess I just didn't make a big deal of it in the early stages and went on with my life instead of worrying about it.

Only in the last few years since I've become RGP intolerant have things started getting 'interesting'. Sure, its been inconvenient having to see my Drs. more often, but as long as I have lenses I can tolerate, I'm happy.

I think it has helped having a background in the sciences. When I started having problems with my lenses I researched the options and asked my doctors many questions. My previous OD commented that he always learned something new when I came in... be it about a new procedure or lens to think about. When ever a new tech does my pre-exam workup, they are always impressed that I know my eye history/state so well.

I've been through many lens types and configurations, numerous fittings and exams, INTACS, plugs, duct hyphrecation (cauterization), countless types of eye drops, solutions, medications, poorly fitted lenses, limited vision (not being able to wear lenses in both eyes for weeks at a time), battles with my insurance company (most of which I've won, thankfully)... its been a long road, but I am all the better for it and I never let it get the better of me.

It is comforting to know exactly where I stand... the progression/state of my KC, what procedures are available to me, how my insurance company works, what technology is on the horizon, etc... instead of being limited only by what my doctors are telling me and being mostly left in the dark. For me, once my KC progressed into a more advanced state, having a higher level of knowledge and control has been a BIG help.

I'm not sure how helpful this is to anyone else, but I felt it was worth writing up.

[GarethB]

Chrism,

It is beacuse i work ni science that I got scared. This is because it is the only business I know and all I know is working in a laboratory. Being told there may well be trouble fitting you with any type of lens (this was from the opthalmologist and optometrist) you know there is know way you can go into a laboratoy environment whilst being legally blind.

Fortunatly I was fitted with lenses and it appears there is another type of lens that may help.

[Louise Pembroke]

When I was young I so wish the group had existed because I felt totally alone, noone to talk to outside of the lens clinic. I didn't fully understand the condition.
Having a lot of problems with lenses at that time and the deterioration in visual acuity taking so much from me, I did feel scared.
As I've got older and post transplant I do go through periods of anxiety, fear of losing what I've got, fear of the uncertainty. Without my precious lens I panic, because it makes me think of everything I wouldn't be able to do without it or if anything went wrong.
I shelve it most of the time, because you have to, but I've also learnt that periods of anxiety are something I will go through and I've had to learn to manage them which might mean just going through it till I come out the other side.
I think when sight deteriorates and particularly with grafting that's when we could do with more supportive input. For some people that might be best served by a support group meeting, or a helpline. Or an appointment with the optometrist, ophthalmologist, lens technician, ophthalmic nurse counsellor or other person either eye/counselling related purely to talk things through.
I'd like to see funded peer support. People with KC, preferably those who has gone through grafting who would meet a person wanting to chat, or go to their place of work to advise, or accompany a nervous person on an appt. There's nothing like peer support, especially when the person has not only 'been there' but is quite knowledgeable on the subject too.

[donna]

My KC absolutely terrifies me. When I first found out I was told to go home and not worry about and that its not too bad because my right eye is not as bad!
I spent a week coming to terms with it and when I went to pick up my new glasses was asked if I was wearing contacts, when I said no the optician was very surprised that I could get around the shop without help. Non of this made me feel very confident so I had a look at the prescription and found out what it was called then googled.Found some worrying sites then came across this one.
The date of my next eye test is looming and I am getting more and more nervous. If there is any changes I will be refered to the hospital for contacts.
The worst thing for me is that there is nothing I can do and there is no way of knowing whats going to happen next, I know there is changes and things are worse than they were in December when I found out.
I think that coping with contacts and not losing one or ending up with sore eyes is the thing I dread the most and I really need to be able to drive at least in the daytime. Life without my car would be very difficult.

[Louise Pembroke]

I think the whole subject of how we cope is worthy of further work, this side of things get neglected because the focus is physical.
Perhaps this is something we should write about for each other and for ophthalmic workers, talk about at events/conferences. I do wonder whether eye hospitals are aware of how we can feel because people tend not to express their fears at appts.

[donna]

I have had panic attacks, sleepless nights and been sick with worry.
There really is no support out there and I am so glad I found this site!
I also find it hard explaining it to people because nobody has heard of it before, luckily the senior social worker at work once knew someone who had it so she helped me explain what it is.

[Louise Pembroke]

I wonder how many people have been suffering panic attacks etc in silence, we really need to bring this out of the closet.
The conf I want to get funded will be more mental health service orientated, but maybe the general issue of the distress and anxiety people experience is something that could be talked about at the next KC Group conference?