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#16178 - 12/01/06 11:45 AM turn blind ?
taskilator Offline
New member

Registered: 12/01/06
Posts: 2

I am a 20 year old guy. I just read from the internet that in Lamellar icthyosis (I am a 'harlequin') you get blind by time. First you lose your ability to see in dark, after that your view gets smaller and smaller until your blind. Is this really true? I thought icthyosis is related to the skin only! I really scared of this, and after I read that, I immeadietly started thinking if my darkview has reduced. I visit eyedoctor once in a year, and the eyes have always been excellent. My eye lids are turned, but otherwise I look very fine, no other physical weirdnesses other than small legs. The site said too that with the blinding, you also get dizzyness and all kind of those things. I haven't notest anything like that. Wouldn't my doctor told me this if it was true?

#16179 - 12/01/06 02:53 PM Re: turn blind ?
wva Offline

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
Well, I am forty and my vision is considered quite good. I just went to the eye dr a few months ago and he said my vision is great. I have a mild stigmatism which makes it a little harder at night or in bad weather and my eyes take longer to focus than most peoples when I wake up in the mornings. But, judging by my vision at this time, it shouldn't be that big of a problem as I grow older. I know that other people on here have complications with their eyes. But, I haven't heard anything on the connection between ich and blindness.

#16180 - 12/01/06 06:04 PM Re: turn blind ?
Laurensmom Offline

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Hello and welcome,

My daughter has Harlequin as well. We see our opthamologist regularly who looks for any evidence of corneal erosion. The cornea, Im told, is made up of similar tissue to the outer layer of skin and can be affected in ichthyosis regardless of type. Like Erin we use a lubricant in her eyes at night (she doesnt fully close her lids) and a artificial tear during the day so not to blur her vision. So far we have been told that her corneas are healthy. Thank God. She does wear glasses but it is because her eyes cross and we are using them to strengthen her eyes vs correcting her vision. I am sure articles are availabe through FIRST that discuss eye issues. Good luck.


#16181 - 12/02/06 12:33 PM Re: turn blind ?
pauline5 Offline

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Taskilater

Everyone is right is not considered a primary condition with icthyosis...but can be a complication in SOME cases if eyes are not cared for...

As others have said corneal erosions are the main reason why this MAY occur...not ABSOLUTE.

I have EHK and i have always had excellent vision...even considered that way now, at aged 42...but since starting University back in 1999, I had noticed some pain and strain when reading a I have been seeing an opthamologist who said I have very mild ectropian, but the main problem is that the thickness of my lower eye lids, is blocking the oil ducts from lubricating the eyeball, (as the role of the oil ducts is to prevent the tear ducts from evaporating when they are excreted)... hence I have dry eye, and this has caused my corneas to be abrased, and have had a few ulcers.

Now I am aware of the problem i use lubricants all the time...

By the way, since using Accutane 4 weeks ago, I have noticed my eyes not hurting me as much...I feel that the oil ducts are now cleared to do their lubricating job...

Don't worry too much, just listen to your eyes when they dry out.


#16182 - 12/05/06 06:00 PM Re: turn blind ?
Chandra Offline

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Paulie's got the right of it. You mainly need to watch out for dry eyes as if untreated, that can cause serious problems.

Ectropian can wreak havoc with your eyes' ability to stay moist so that's why there's always concern about how severe someone's ectropian is, whether it will stabilize or continue to get worse, etc. and so forth.

When I was growing up, my ectropian continued to get worse until about age 13. Until it stabilized, we were concerned that I might lose my sight. Thank goodness it stabilized.

I'm sure some of you know this, but I didn't! You can directly moisturize the exposed eyelid with something like petroleum jelly. Tracy mentioned this to me at the conference and I'm so grateful. I thought I shouldn't put anything on my eyelids but being able to moisturize that keeps me a lot more comfortable. Like I said, many if not all of you may already know this, but I didn't so I thought I'd bring it up on the off chance someone else didn't know. I would recommend being really careful about doing this - ie, make sure you do it in front of a brightly lit mirror, make sure you're using petroleum jelly that's not contaminated with anything else, etc. and so forth.
I am female, and was born in 1972 with Lamellar Ichthyosis.


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