Page 2 of 2 < 1 2
Topic Options
#15747 - 08/11/04 06:22 PM Re: Questions Regarding Ectropian
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
Good advice. Thank you all! I'm going to wait on it. I didn't know that about the tear ducts...

Susie
_________________________
Susie

Daughter, Emma born 9/2001 -unaffected
Son, Andrej born 8/2003 - has Lamellar Ichthyosis
Daughter, Tori born 3/2006 - has Lamellar Ichthyosis

Top
#28797 - 02/08/13 03:04 PM Re: Questions Regarding Ectropian [Re: SusieL]
Sagittarian2012 Offline
New member

Registered: 12/15/12
Posts: 3
Hi,

Notice it's been awhile since someone posted on this topic but I have to see an eye specialist next week. Went to an eye doctor about an infection and she noticed my bottom eyelid was starting to pull down. I'm a 44 year old male with LI and never really had problems with my eyes before although I knew this could become an issue someday. Just wanted to see if anybody out there has had work done on their eyes recently. Would like to avoid any work done on my eyes but I guess I'm just wondering at what point do I know that I can't avoid operations on my eyes.

Top
#28799 - 02/12/13 05:32 PM Re: Questions Regarding Ectropian [Re: SusieL]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Have you tried using a topical steroid on the lower eyelid? There's a medication called Tazorac that works similar to the oral retinoids but with significantly less side effects because there is only a small exposure point and has a very fast absorption rate, so it is completely out of the system within a day or two of use. (Oral steroids are still in your body for weeks, months, or sometimes years, depending on which one you use).
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

Top
#28800 - 02/14/13 01:47 PM Re: Questions Regarding Ectropian [Re: SusieL]
Sagittarian2012 Offline
New member

Registered: 12/15/12
Posts: 3
Thanks for the information. Dr. wanted me to start using lacrilube and ocupads and see him again in two months. Doesn't seem to think that any operations are needed at this point.

Top
#28813 - 02/20/13 10:24 PM Re: Questions Regarding Ectropian [Re: SusieL]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
You've gotten through 40 years without needing lacrilube? I assumed that was a given when I posted last.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

Top
#28836 - 03/02/13 02:27 PM Re: Questions Regarding Ectropian [Re: SusieL]
stc Offline
New member

Registered: 11/24/12
Posts: 3
Sag 2012,I didn't start having problems with my eyelids until I was about 45.I'm 54 now.I had ectropian repair (left eye}Jan 2008.It didn't work all the well,The Dr said it was retracting.Had surgery done again.This time the Dr added too much skin.so I have a bag under my eye.The right eye was getting worse.Since that time I have been massaging upwards with Lotemax,or FML ointment.I do this at night before bed.Right before I lay down at night,and after a shower,I use aquaphor around both eyes.That keeps them moist.I try not to sleep with my eyes hitting the pillow.

As far as tearing goes.I clean my eyes(morning mucus)with a cheap eye drop.Then I use a good lubricting eye drop,right before I leave the house.That seems to help with the watering eyes.

Top
#28963 - 07/09/13 01:26 PM Re: Questions Regarding Ectropian [Re: Sagittarian2012]
Lisa Scott Offline
New member

Registered: 07/09/13
Posts: 1
Loc: N. Carolina
I signed on to this website after many years not checking in. My reason is because of corneal ulcers & eye infections due to my ectropia. I need to see if this is a problem faced by many or is it just wierd me. This is my second bout of infections and I'm very close to a ruptured cornea because of the thining caused by the ulcers. Is anyone else experiencing this issue? I have had approximately 10 eyelid surgeries with mixed results since the age of 6 and I'm now 58. I've purchased enough Genteel that I should have stock in the company and I swear by my moisture chamber goggles for nighttime. Is anyone else doing anything special to prevent dry eye and the resulting corneal damage?

Top
#28966 - 07/14/13 10:52 AM Re: Questions Regarding Ectropian [Re: SusieL]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Lisa
I dont have lamellar ichthyosis, but some of my friends use Lacrilube and a product called Tears Away. You might like to contact our FIRST foundation (info@firstskinfoundation.org) for a product list for your ectropion and to be connected to those affected with ectropion. I hope this helps.
Les
_________________________
Les Avakian

Top
#28995 - 08/11/13 08:19 PM Re: Questions Regarding Ectropian [Re: SusieL]
Kanga Offline
Member

Registered: 12/01/11
Posts: 11
Loc: Queensland, Australia
G'day Lisa,

I am 35 and could tell a similar story to yours having had several surgeries myself. One newish product that I have come to depend on is "Tears Again", which is an eye spray that helps to keep the eyes moist.

Good luck with your eyes!
_________________________
Kanga
(Jeffrey Gridley - Lamellar Ichthyosis)

Top
Page 2 of 2 < 1 2

Moderator:  Laura Phillips 

Copyright 2012 Ichthyosis Information