Butterfly1987
2 posts
May 27, 2009
3:20 AM
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I am new to this message board & I was reading all kind of subjects opened by you guys: Coats & driving, Coats & pregnancy, Alignment surgery & so on... exactly the things that were on my mind since forever! I find this site very helpful & interesting! When I will have time, not right now cause of exams... I want to read more! Ok, the reason of my topic is that I would really like to find some Coats friends from anywhere around the world... & maybe exchange emails. I lack friends with Coats... dont know anyone except me that has this. Would make me feel so great talking to someone! Anyone interested? :)
Have a good day!
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jjmullins
13 posts
May 27, 2009
6:21 AM
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where are you from. we live in ohio. our son has coats' he is 7
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Butterfly1987
9 posts
May 30, 2009
8:34 AM
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Hi, my name is Claudia & I'm from Romania! 22 with Coat's in my right eye.
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presca
43 posts
Jun 04, 2009
4:16 AM
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Hi
I am Presca. You can be our good friend since you are the one who can share your experience of coats with the anxious mothers like me. My 3 years son has coat's in his right eye. Most of the time I forget that he cannot see with his one eye. But often tears fill my eyes when I see his innocent face who still doesnot know about his disease.
Presca
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BillE
1 post
Jun 06, 2009
12:30 AM
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I am 47 years old, and live in Virginia. I was first diagnosed with Coat's disease in 1977 at Walter Reed Army Medical Center and had laser surgury on my left eye. I had a second laser treatment at William Beaumont Army Medical Center in El Paso, TX in 1979.
I was fine for 30 years, however, it has come back and is near the optic nerve and laser is not a viable option at this point. I will be going with the Lucentis injections as recommended by my opthamologist at Augusta Eye Associates / Retina Care of Virginia located in Fishersville, VA. I am hopeful that this will help clear up my vision.
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Butterfly1987
11 posts
Aug 30, 2009
6:09 AM
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Hello Presca & all!! I'm sorry your baby boy has Coats. My advice for you & your family although is not easy would be to try as much you can to treat your son like he doesnt have anything. Dont ever discourage him, let him do whatever he wants, studying, sports, anything & everything... he will maybe feel some difficulties doing some activities but he will adapt, adjust & do just fine & maybe even better than some ppl with perfect vision. I talk from my own experience, this condition made me very, very ambitious. I always wanted to be same as the other, but most times I realised I became lots better than them. Someties I ask myself if I would have been same person without it.(& I think of all my positive traits when I say this) I was never big fan of sports, but when it comes studying I had scolarship in University, perfect scores, ranked between the 1st 5 in my major... better than lots of other colleagues of mine. Is a matter of perspective how you see this condition, is important not to see it as a handicap (because most time you dont feel it, you even forget you have it), but rather as smth that makes you unique & special because even though you have it you can rise above & shine.
At what age you plan to tell him?
Last Edited on 30-Aug-2009 6:15 AM
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Butterfly1987
12 posts
Aug 30, 2009
6:24 AM
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BillE I hope the treatment described will help you! I have never had anything done on my Coats eye. I discovered it aprox 12 years ago... at 10 & was in the final stage. They said unfortunately they cant do anything for me... but I cannot complain my eyes look almost perfect.
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Mandapanda123
7 posts
Aug 31, 2009
4:05 PM
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I know what u mean we didn't know what it was when i took my five yaer old to the doctor just for a eye exam the school required that when we found out it was a shock to me and my husband
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Butterfly1987
17 posts
Sep 01, 2009
4:15 PM
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Mandapanda123 I know is shocking, but dont let it bring you down! Be strong for your child & fight for her best interest! The decisions you make now will affect the course of the rest of her life...
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