Occuler Rosacea, Rosacea Keratits...please help

[Neveen]

Since I was 18 I've been dealing with Rosacea Keratitis, my cornea's keep perforating, my blepharitis is driving me insane!. My eyes are always red, always in pain (I'm in college, struggling to get my degree in Graphic Design) I'm 24 now, and have had 2 corneal transplants and way to many ulcers than I can count. I'm in Doxycycline and Predforte for the past 6 years, dossages change but my eyes continue to develop the same symptoms..slowly my cornea is getting thinner in some area's and my stitches now (I had a transplant 3 months ago or so) keep getting infected.
I have no idea what to do anymore, since I regularly clean my eyelids, take my medication.
I live in Miami so the hospital I go to is Bascom Palmer, and the sun and heat here aren't so great for my skin, but I don't mind if my cheeks are really red, but the pain in my eyes just keep me from being able to finish school. I can't sit there and stare at the computer for hours like I used to anymore and my vision is horrible.

Right now I only have one hard contact on (I can't wear a contact in the other eye for another 6 months due to the transplant) so I can half see...
so I'm a pretty sucky graphic artist at the moment.

Anyone else with a similar problem? how do I keep my cornea's from continuing to fall apart? last 6 years they keep threatning to reject and it's driving me nuts!.
<3

PS: what face cleanser/makeups can I use? I don't use mascara or eyeliner or ANY kind of eye makeup due to my blepharitis, but I mean like powder atleast to minimize the redness of my cheeks.
At this point it feels like my eye problem is just going to keep happening and I'm getting nowhere with treatment.


http://i75.photobucket.com/albums/i288/Neveeen/myeye.jpg[/img]

[phlika29]

Neveen

I apologise for the problems you are experiencing. I will post it up in the mod sectino and see if we can sort it out. Could you try again or if not perhaps PM me the message and I will copy and paste it up for you.

Sarah

[Neveen]

I see the post o.o you don't?

[redhotoz]

Hi Neeven

Your posts were not showing, as your first post contained a link (the photo), which needs to be approved by a Mod. Your account then needs to be added to the trusted member list, which I have now done.

redhotoz
Forum Admin

[Neveen]

Since I was 18 I've been dealing with Rosacea Keratitis, my cornea's keep perforating, my blepharitis is driving me insane!. My eyes are always red, always in pain (I'm in college, struggling to get my degree in Graphic Design) I'm 24 now, and have had 2 corneal transplants and way to many ulcers than I can count. I'm in Doxycycline and Predforte for the past 6 years, dossages change but my eyes continue to develop the same symptoms..slowly my cornea is getting thinner in some area's and my stitches now (I had a transplant 3 months ago or so) keep getting infected.
I have no idea what to do anymore, since I regularly clean my eyelids, take my medication.
I live in Miami so the hospital I go to is Bascom Palmer, and the sun and heat here aren't so great for my skin, but I don't mind if my cheeks are really red, but the pain in my eyes just keep me from being able to finish school. I can't sit there and stare at the computer for hours like I used to anymore and my vision is horrible.

Right now I only have one hard contact on (I can't wear a contact in the other eye for another 6 months due to the transplant) so I can half see...
so I'm a pretty sucky graphic artist at the moment.

Anyone else with a similar problem? how do I keep my cornea's from continuing to fall apart? last 6 years they keep threatning to reject and it's driving me nuts!.
<3

PS: what face cleanser/makeups can I use? I don't use mascara or eyeliner or ANY kind of eye makeup due to my blepharitis, but I mean like powder atleast to minimize the redness of my cheeks.
At this point it feels like my eye problem is just going to keep happening and I'm getting nowhere with treatment.


http://i75.photobucket.com/albums/i288/Neveeen/myeye.jpg[/img]




At the rate it's going...I'm worried I'm going to end up blind, even after both transplants, I continue to get ulcers and infections...
even on all the medication.
Which is why I'm looking for people with this severe of a case of Ocular Rosacea, trying to see if maybe another option would be good or what I could possibly do.
I barely go out really, because the sun hurts my eyes so much (I live in Miami). I'm on a diet, regularly clean my lids with occusoft lid cleansers and johnson johnson baby shampoo and qtips. Doxycycline twice a day for the last 6 years...predforte, tobradex, Vigamox and have recieved Steroid injections in my cornea directly because of rejection..

Please help,
what else can I possibly do?.

[redhotoz]

Hi Neveen (got the name right this time!)

I so wish I could offer you advice but I really don't know. My eyes play up from time to time but nothing like what you are describing.

I do remember an e-mail from the Yahoo Rosacea Support Group ( http://groups.yahoo.com/group/rosacea-support/ ) that I copied over to this Forum last year:

http://forum.rosaceagroup.org/viewtopic.php?t=3400

Please do check out the threads and posts in this OR section. There is a lot of great info.

Also, there is an OR section in the RSRP (Rosacea Support Resource Pages) which you can find here:

http://rosacea-research.org/wiki

Check out the "Expert's Comments" at the bottom of the main page.

Best of luck with everything and please let us know how things go.

Jen

[Neveen]

update: went to Bascom today
I have a small cataract now in my right eye...due to too much steroids LOL..
now I get what everyone meant by not wanting to take steroid drops too much..