weird eye problems. Anyone got this?

When I was about nineteen, my right eyelid started swelling up like a golfball, once a month. No vision problems. Not an allergic reaction. No explanation. Just swelling.

After ten years or so, I finally got a diagnosis: blepharochalasis syndrome. It means, ta da…

my eye swells up. There was no real explanation except that maybe it was an autoimmune problem. The only cure, or solution was to wait until I outgrew it (it usually stops after ten years or so) and get plastic surgery to repair the damaged lid.

It’s rare, big surprise! But they never said how rare. One in 10,000? One in 1,000,000? I don’t know. And there’s not much information out there. I’m a reference librarian and if you can find more on this subject then I have, you can have my job.

But does anyone have this, or do you know someone who knows someone? It would set my mind at ease to know that I have company.


Blepharochalasis syndrome is separate and distinct from dermatochalasis and is a rare disorder which typically affects the upper eyelids.

It is characterized by intermittent eyelid edema, which frequently recurs. This results in relaxation of the eyelid tissue and resultant atrophy.

It is unilateral in approximately 50% of the patients.

It can be separated into early and late phases. The early phase is further divided into hypertrophic and atrophic forms.

The cause is probably a localized form of angioedema.

Sequelae include conjunctival edema and injection, entropion, ectropion, steatoblepharon, ptosis and excessively thin skin.

Blepharochalasis can be rarely associated with agenesis of the kidney, vertebral abnormalities and congenital heart defects.


From: http://www.emedicine.com/OPH/topic209.htm

I’m not a doctor so i’m not sure what most of these terms mean, but a search on altavista came up with over 200 pages just for Blepharochalasis syndrome.

Fran

Actually, i just re-read your post and saw that you’re a research librarian, so i doubt if this is isn’t something you already know. That must’ve seemed quite insulting - my humble apologies :slight_smile:

Fran

Francesca:

Insulting? Hell, no. You rock! I must be using the wrong search engines, or spending too much time searching medline and not enough time on the regular net. Come, sit at my desk.

Those are the symptoms, all right. Proof that it’s not just all in my head. Although where else would eye problems be? Now I’ll go back to alta vista, although the last time I searched this with them I came up with a couple of porn sites. Go figure.

One of the local,30 miles away, hospitals has a medical library.
Don’t know if you’ve tried somewhere like that or not but it might help.
The local,same town, Jr college is heavy into nursing so that might be the reason for the library.

perches on desk

Well that page came from Google, where i also found this:

http://www.ogh.on.ca/eyeinst/jordan.html

In the sources/ biography at the bottom it mentions a book of 10 case studies of said syndrome that might be worth looking at too.

Fran

Here is the AltaVista list of results, and here is the one from Google.

I hope this helps.

-----:slight_smile:
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Thanks for the replies. I did a little searching and those lists of 200 can be cut down to 4 or 5 when it comes to the actual syndrome I’m talking about. Plain old blepharochalasis is just puffy eyelids, and it’s a common problem in the elderly. That’s the source of a lot of the hits. The syndrome itself is found in younger people and is more unusual. But the emedicine page is exactly the thing, from what I can tell.

I’m not hearing from any fellow sufferers, so the teaming millions must all have good eyes.

Well, not me, but my sister used to have that problem - the swollen bump on the eyelid thing. IIRC, it lasted from her late teens into her twenties and seemed to occur when she was overtired or had done a lot of reading. The various eye docs she went to had a variety of explanations - the only one I remember is “blocked tear duct” - but none of them seemed to help much, either. She did outgrow it.

Aha! Thanks Aseymayo. I’d only heard of one other person with this problem, and it was a friend of a friend’s sister. Kind of hard to track down.

The first time it happened to me was exam week 2nd semester in college. Too much stress, too much reading or over-tired. Doctors always cried allergy and friend just thought it was psychosomatic.