Keratoconus might be progressing, but over a month until next appointment...

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natalienb
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Keratoconus: Yes, I have KC
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Keratoconus might be progressing, but over a month until next appointment...

Postby natalienb » Tue 24 May 2016 4:50 pm

I was diagnosed with keratoconus at the start of April after having difficulty reading at a distance, particularly sheet music - all the notes become a huge blur on the page and when sitting down at orchestra I couldn't read the page on the other side of the stand.

At my appointment I was given drops, and I would have another appointment in around 2 months time to check if it is progressing, as I am only 22. My next appointment is at the start of July, but I am finding it much harder to see already - now I can't read any of the pages on the music stand and I keep holding things up to my face to read them.

Do you think if I contact my hospital they would give me an appointment sooner, or will the original appointment be the earliest one they could give me? I don't know if this is just normal and I should wait it out, or if it is more serious and I should say something?

Also did this happen to other people and was there anything that helped you while you were waiting for contacts/treatment? For example, I have some LED lights, but our rehearsal space has old fashioned orangey lights and I find they don't help much...

Kerry Mc
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Keratoconus: Yes, I have KC
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Re: Keratoconus might be progressing, but over a month until next appointment...

Postby Kerry Mc » Wed 25 May 2016 8:31 am

From experience better light works for me, re your eye sight, have you tried contact lens? These corrected my vision for years, after glasses failed to do so

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Keratoconus might be progressing, but over a month until next appointment...

Postby Anne Klepacz » Wed 25 May 2016 10:51 am

Trying to read music really shows up the effects of KC - unlike reading words, which you can often guess at from the shape, there's no guessing with where the notes are on the stave! KC progresses at different rates in different people so there isn't really a 'normal'. Contact lenses are likely to make a big difference to your vision so although there probably isn't an earlier appt, it would do no harm to ring the hospital and tell them you'd happily step into a cancelled appointment if there is one.

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space_cadet
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Re: Keratoconus might be progressing, but over a month until next appointment...

Postby space_cadet » Fri 27 May 2016 2:55 pm

welcome to the forum, a follow up on the NHS in 2 months is actually rather quick, if you feel your vision can't wait until then tho most eye units have a eye casualty dept which you can turn up n wait to be seen at. x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world


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