Carol said on 2013/01/15 at 11:55 am
Hi all. Last year I was finally diagnosed with corneal dystrophy after years of severe light sensitivity and eye pain. Since then I have had a rapid deterioration of the sight in my left eye, due to a corneal ulcer. I feel as though some of my visits to the eye clinic are a waste of time as I am unsure what questions I should be asking, and come away with them telling me my sight is worse. As though I didn't already know that.
Also, I have periods of feeling quite down about the sight loss and the associated pain but don't want to keep mentioning it to my family as I'm sure they will get sick of hearing about it. I'm assuming this is normal?
Any advice please
Carol
sleepwalk said on 15/01/2013 at 11:55 am
Hi Carol. What you say is perfectly normal. Even those of us who were born with sight loss have low periods sometimes. Even me and 'm an extrovert. I went through a really down period when it seemed that nobody wanted to talk to me or be friends with me. There were times when I thought it must be my fault. The trick is to find something that interests you and develop a hobby or something of that nature. For me it was creative writing. I got to vent my spleen on the written page. it worked a treat I can tell you.
paulette owens said on 04/01/2013 at 6:34 pm
hi, i also have Fuch's Corneal Dystrophy and if you don't already know, this is an inherited disease. I am 63 and have had corneal transplants on both eyes. I also have Macular Degeneration as an addittional eye disease and that is also heredity. My 1st procedure was in 3/11 and the 2nd was 5/23/12. In between procedure I was diagnosed with a rare form of leukemia and received cheo for several months. I was amazed at the marked difference in the success of the 2 procedures. The worse eye was the 1st procedure and after 6 monts was vision improved to 2/40; that is not the case with the surgery I had in may; after 6 months vision remains at 20/50 to 20/60 and also increased pressure has been an issue and I have been prescribed numerous drops to counteract.
Hope this was insightful
TNS said on 27/12/2012 at 12:23 am
Hi. I was diagnosed with a "genetically defective" cornea (epithelial basement membrane dystrophy). I became extremely light sensitive as I had scratches/erosions on both eyes. It took surgery to heal one and the other managed to heal on its own after 6-7 weeks. Accidentally discovered that magnesium (with chelated zinc) heals my corneas. I was using magnesium for floaters. I had no idea it helped with EMBD until an eye doctor was a little stunned by the striations in the cornea getting less visible. They are still there, but have improved and I have not had a recurrent erosion in 1 3/4 years. It looks like it was simply a magnesium deficiency. It does take more than a multivitamin level of it to help. I take it up to the point that the floaters in my eyes are transparent. I will never fear taking more of a supplement than what is recommended (with a few exceptions).
Kathryn Wyss-Janes said on 19/11/2012 at 5:11 pm
Hi Carol x I am finding my life increasingly difficult x I feel very alone in my disability x the hospital make me feel very small x they don't know what to do with me xx
Carol said on 14/11/2012 at 9:14 pm
Hi Kathryn
There is a Fuchs website that you can join and the people on the forums there are very helpful. But, even so, it's still difficult to find someone with the same experiences. I don't know if you work but I do, in a school, and I am finding it increasingly difficult. I would like there to be somewhere I can go to talk and ask for advice. I was hoping that someone on this RNIB forum would have a suggestion
Carol x