When my son was diagnosed with Coat's Disease when he was five, there was hardly anything on the internet about the disease. What a wonderful resource this site is for worried parents! My son, Luke, is now going on 16. He is handsome, a defensive lineman for the football team (yes, we have a shield in the helmet), a championship wrestler, and the girls love him. He is sensitive, spiritual, and a good soul. His eye was removed when he was 5, 8 months after diagnosis. The pressure in his eye caused a severe headache. A skilled pediatric eye doctor met us on a Sunday to take a look at him, but he was bewildered when he could not get the pressure to come down. I called our diagnosing dr. at Duke and she said to bring him to Duke right away and his eye would be removed the day after our arrival. I cried on my friend's shoulder as we prepared to leave and told her that I was scared no one would want to marry Luke one day. Well, I can tell you 10 years later, that this will not be a problem! I hope I can keep them away as he prepares for college! Our dr. at the Duke Eye Center told us that so many youth hang onto their eyes even when there is pain, disfigurement, and continuous treatment. She has asked Luke to write up a booklet to give to teenagers so they will realize that if enucleation is called for, that teen is going to look and feel a lot better! I want to keep this as short as possible so I will say that there are 3 essential things to ensure with enucleation: (1) Have a skilled surgeon because the subsequent movement of the eye prosthetic will wholly depend on the surgical technique of the surgeon (I can explain more about the surgery if you wish to e-mail me: the prosthesis is like a large contact and, unlike the old days, it moves); (2) Get a referral to a talented prosthetic maker. Luke's "fake eye" is a work of art that matches his natural eye perfectly; and, (3) Ensure that your child does not feel like he/she has a disability. This is very hard as a mother or parent, but my son can tell you that it made a tremendous difference in how he sees the fact that he has a fake eye. It has been everything. I am happy to answer any questions about our experience if you wish to e-mail me. I have just found this site, but I might post a picture of Luke so you can see how natural he looks. We forget about the "fake eye" all the time! Don't get me wrong: I had many a cry and heartache. But I never let Luke see that. I didn't assume that he grieved the loss of sight and the eye like I did. In fact, he didn't. We were fortunate that there was no treatment. Luke was stage 5 when he was diagnosed, so he never associated coats disease with pain or discomfort. Please know that you can handle the worst case scenario: eye removal, and go on to feel blessed and happy without anyone knowing unless you tell them. Hopefully knowing that will enable you to feel more calm bc the worst usually does not happen.
This is a message I was waiting and hoping to receive on this web page since our son was diagnosed 2.5 months ago.To find out that with Coat's disease even if worse comes to worse it's not the end of the world and that my son will look as normal as other kids is fantastic news!( I was scared nobody would marry him as well!!!!) Thanks ever so much!Photos of your son would be excellent, you may email me ( Dave can give you my email) or add it on the web page.So gratefull for the time you found to post this message, thanks a milion!!!!I think I will sleep well again.
Okay, I am dumb. Is Dave the webmaster? How do I get to him? I don't mind posting my e-mail on this site unless there is a rule against it.....Then you could send me your e-mail address. I also don't mind if Dave gives you mind. Just tell me what to do. Thanks!
Lukes'mom, Some parents do not want their email address posted for all to see. Once I get permission from both parents, I send the email addresses to each of them. I will not give out anyone's email address without permission, but you are free to post it if you wish. As a matter of fact, I am very grateful that you are willing to do so. You clearly have a lot to offer to the parents facing one of the most painful and difficult decisions a parent can make. Your willingness to help other parents through this difficult time speaks volumes about the kind of person you are, and it is greatly appreciated. I have been really busy at work, so I have not had time to respond to your very kind email. I will get to it this weekend, though.
Take care, Dave (webmaster and Jacob's proud papa!)
I have been in contact with the poster on this message, as well as several others. My husband told me that I should have posted my e-mail with the @ spelled out. That way, spammers who have programs searching the web for e-mail addresses can't pick mine up. Oh, well. Thanks so much for your site. It is such an unselfish service. --And Jacob is one hadnsome boy. :-)
Luke's Mom, Thank you for sharing your story. My son lost his eye about 2 and a half years ago. And like your son he is great. My son is 6 now and plays all sports and is an avid swimmer. The only sport I would like him not to do is Wrestling. you mentioned that your son wrestle's does he get poked in the eye or did you ever worry it may come out. Wrestling is the one sport I didnt want him to try. Well My husband signed him up and he loves it. Did your son ever have any trouble with his prostectic. Thanks again for your post. angie
