UK Keratoconus Self-Help and Support Association

Hi all
I hope everyone is well and happy new year!

I know this has probably been answered many times before but im just curious....
I have had my current set of sclerals for approx 4 years ish and i have recently noticed that the right one in particular keeps getting as large build up of protein deposits on it and my vision is gradually getting worse as the day goes on.
My eyes have recently been much more sensitive after having such a good run with them over the past year. I have been wearing sclerals now for about 7 years. Im not sure whether this is down to protein build up or because im working on the wards and my eyes are becoming dry and more tired as the day goes on. Im only working 25 hours a week at the most as i struggled so much with full time working.

I always clean my lenses with miraflow then regular saline (which i get through gallons of a the week....it costs a fortune!) Does anyone have any ideas as to what i could use? I have noticed from previous posts that people used a protein remover over night? Any suggestions would be welcolmed.
I am in need of a review of my lenses but for now i need something to tie me over. Im really hoping my eyes are not getting intolerable of sclerals as these are my only option to be able to see!

Thanks as always for your help
best wishes
sarah xx

sarah

I managed to avoid any protein build up on my sclerals by washing them thoroughly each time I took them out. I used undiluted AMO Total Care (the wetting and soaking fluid; it is gentler than the cleaning fluid).

Every good wish

Andrew

Thank you andrew i may have to try that. My optician is sending me something to soak them in over night., so hopefully that will do the trick.

Just wondering...... i spend a fortune on lens cleaning products does anyone get any help with this? i.e benefits to help towards the costs. I think its awful that we are not entitled to help. I am only working a max of 25 hours a week and at the minute this is reduced as i am not tolerating my lenses.

Thanks again for your help!

Hi there Sarah

As soon as you get a couple of hours spare (ha! I know...) apply for Disability Living Allowance (DLA). You can do this online here:

http://www.dwp.gov.uk/eservice/

But it's useful to read the guidance here first:

http://www.direct.gov.uk/en/DisabledPeo ... G_10011925

Now, this is where the fun starts. Many people will no doubt chip in here about how they have gone through this rigmorole and been declined. Given how the system is constructed, it is very easy to end up with this outcome. What isn't anywhere in the DWP's advice is an over-riding principle when making the application -- for those of us with Keratoconus, if you have bad eye days, then you must say how things are for you on your bad eye day(s).

As you complete the application, you'll see there are qualifiers such as "how many times per week do you..." or "how often do you find you are unable to...". This allows you to have what I think we would term a "part time disability". Use these to specify when -- on your bad days -- you are unable to cook, clean or take personal care of yourself. It is vitally important to be honest and thorough about describing how things are for you.

For example, do you sometimes have your partner / friend / relative cook a meal for you because you've reached your lens wear tolerance limit ? Make sure you think about if and when this happens -- and if it does, how often. Or, do you work (using up your lens wear time limit) and get home meaning to do the cleaning -- but find that you can't do it effectively and have a family member do this ? Again, consider it and make sure you specify it.

Now we come to the icky bit. What I really wish is that space_cadet could pop up here she'd have just the words I need, but she's not on my speeddial so I'll just have to do my best. Here goes... in completing the form do notbe bashful or squeamish or embarrased about candidly completing the "toilet needs" questions. Here, being a man may put me at a disadvantage because of ah-hem, the position adopted -- and the consequential "aim accuracy" issues. But given I am not able to wear my lenses for more than 6~7 hours at the moment (hopefully the lovely Lynn might be able to sort me out with the Kerasoft IC lens -- but that's a hope for the future at the moment and not the subject of this post...) and calls of nature won't wait the remaining 14 hours, you end up perofming a task which you're not really able to perform with the correct level of precision. Worse, you don't know, because you can't see. And even worse, you don't appreciate the error of your ways until the next day sometimes when the light is better and you've got your lenses back in. Yuck. Well, certainly for those around me that have to point these sorts of thing out, or worse, sort them out because I simply can't see the offending material.

For women, obviously I'm on unfamiliar ground, but maybe somthing similar applies...

Really, the lack of dignity we have to go thorugh ! There must be a better way than this, I say to myself. But if you want your application to be considered fairly, then you have to tell it like it is. These questions probably carry a high weighting in the overall assment score, so honesty is vital.

After making the applicaiton, I recieve the lowest rate for the care and mobility components. Not a fortune, but it covers solutions, hospital visits, transport, hot water, and hygene products -- and the bits of treatment where the NHS lets you down. Everyone is different, so you have to apply as per your individual circumstances.

Finally, it's worth looking at the RADAR website.

http://www.radar.org.uk/radarwebsite/

RADAR are passionate about disability and equality. I heard the Chair of RADAR Phil Friend speak recently -- a real inspiriation. One of the main things I took away was how having a disability -- and depending on how we are affected by Keratoconus we may well have a disability -- tends to make one negate your needs and be ashamed for asking for help. It's easy to -- over many years -- to let yourself drift into appology and deference about what changes you require from people. This includes the DWP ! So, getting on my soapbox, let's all ask for what we're entited to !

Best wishes, and let us know how you get on if you do decide to apply for DLA.

Chris

Hi Chris,

Thank you so much for such brilliant advice. I have indeed submitted applications before and been rejected. I recieved my form today so have started filling it out already. Fingers crossed because at the minute im not tolerating my lenses every day for long periods. I will let you kniow how i get on.

Thanks again so much
Best wishes
sarah

I scrub my sclerals (RGP ones, daily, and the old PMMA ones before that periodically) with what the people who make mine use to clean them: washing up liquid.
I've never knowingly had any problem with protein deposits in 30-something years.
No doubt an optom will now arrive juping up and down and screaming at me.
But it works for me...
What's more, washing up liquid is (comparateively) cheap, and you can get all you want of it in any supermarket, and most of the latenigjt got everything corner shops, no running out.
Rosemary