Terrien's Marginal Degeneration - Rare Eye Condition

[Naska186]

Hello everyone,

My name is Nastassja, I am 25 female and I am writing in this forum since I am a bit desperate. It seems that I have a very rare eye condition - called Terrien's Marginal Degeneration or Morbus Terrien in German.

In a routine check in 2008, my eye doctor realized that something is not right with my eyes. Firstly, they thought it is a Pterygium - however after going to many other doctors, they called it a Pseudo Pterygium. I have it on both eyes where the conjunctiva is growing over the cornea. Last year in 2012 they said it it could be Terrien's Marginal Degeneration where the cornea is thinning and the conjunctiva is growing over it to protect it.
2 weeks ago, I went again to the hospital - they were telling me I have Rosacea in my eyes. However, I do not believe this since I do not have a permanent redness in my eyes. However, it seems to become worse.

In generel my condition is as follows:
Just from time to time, if I am very tired my eyes become red and the area with the thicker conjunctiva even more. My eyes are always very dry - I need to have eye drops 4-5times a day. On top of that, on one eye, there is already a little cyst which you can see when looking in my eye.

The doctors do not know what to do - and I dont either. I just wanted to know whether anyone of you have heard of a similar case with this rare condition? This would really help me out.

I attached a picture of my right eye.

Many thanks, Nastassja

[TiffanyTiki]

My name is Tiffany and I am a 34 year old in the US. I have the world's wose case of Terrien's, told to me by the top cornea doctor in the world. For the last 10 years I have been in constant, terrible pain and now I am blind from this disease. I have had two cornea transplants in my right eye and an about to start on my left. I still cannot see well out of my right eye, but hopefully I will again. Here is my advise - I finally found out what was causing the intense inflammation in my eyes. It is caused by eating wheat and dairy. I have been to soooo many different doctors and nothing has ever helped, but when I changed my diet, the inflammation stopped. If I had done a simple elimination diet when I first had eye pain, perhaps my corneas would still be healthy and not full of holes. I would implore you to try this just to see if it helps. Give it about a month and see if it works.

[Naska186]

Hi Achillea - thanks for the info  - can you post me the link to the eye? i am very interested to see that! thank you!! have a good weekend!

[achillea]

Just now, I noticed that there was a great deal of information on the web about ocular rosacea and pseudopterygium (one of the articles had a photo that looked a great deal like your eye).

If you have not google-searched these terms, please do so to enlarge your knowledge base.

[Naska186]

Hi Achillea,

thanks for the link! That is really useful - especially the one about the Autologous serum therapy. I can remember that the specialists also said something about immune weakness - so when I will see them again (which is in 3months - I see them on a regular basis to observe my eye and take pictures of the development) I will also mention Cyclosporine.
I already use a lot of Lubricating drops which helps me through the day.

Nevertheless please note, my specialists are only assuming that I have this terrien. There were also thinking about rosacea... and previously they called it "pseudo" pterygium.

thanks

[achillea]

Ah, I see the medhelp censor did not like the link I provided.  However, you can still find it by typing this into your google search:

Treatments for Terrien's marginal degeneration?‎ - Jul 28, 2006

[achillea]

If you have already seen the best doctors in several locations, it would seem you have no choice but to continue searching for answers on your own.  I assume you have researched the condition extensively?  For example, a google search for "Terrien's marginal degeneration" turned up this information:

http://*****************/question/index?qid=20060728193730AAFoQT8

[Naska186]

Hi Ray,
I already saw several specialists. Already in Germany in a University Medial Centre as well as in the UK Moorfield Eye hospital which one of the best eye hospitals in Europe...

[Ray T Oyakawa, MD]

Please see a corneal specialist at a University Medical Center.

Dr. O.