i am jon dishon.I am 32,and was born with coats.it was not until i was 3 that my family,and dr's figured this out. I had several operations when i was a kid,keep in mind,that was in the early,early 80's,and lasers were "new" and expensive,and i am still totally blind in my left eye.No improvements.It only got worse with time.I would cry blood(scared my catholic grandma),I have glaucoma,cataracts,opthalmic migraines,Macular Degeneration,and all that sort of stuff.This last month,i lost my pupil,i don't know where it went,but its not in my eye.I am thankful for my right eye,which has horrible vision,but with glasses i see fine.Although my perscription strength has gotten worse every single year since the age of 4.My visibility is about 3 inches from my face without glasses.However,i drive,well i might add,i am a professional touring/gigging musician,don't need 2 eyes to play guitar,or piano,or dj. I have 2 degrees,and a professional financing license in texas.So life is not bad,beautiful wife who is a musician/model/poet/artist.So to kids who are dealing with this,don't fret,life will be just fine,Don't ever miss an eye doctor appointment...ever.I go all the time.I have tons of cool glasses,some tinted,cool styles,and although it sucks to wear an eyepatch in elementary,or have a wierd colored,or strange shaped eye,guess what,when you are in high school,it makes you stand out,makes you different,you can turn it into a strength,i did,and do.Plus pirates are cool.The musician David Bowie has 2 different colored eyes,and he is awesome,famous(a little wierd,but whats wrong with that?) Basically the only thing you miss out on is 3D(i will tell that after 32 years,i'm still bitter about that,ha ha) But jaws-3d was a stupid movie anyway,so what the shark jumped out at the screen,it makes us look cooler,cuz we are not scared like the rest of the 2-eyed people!And my bloody valentine,well that was scary with or without 3d.Coats sucks,but its not that bad.The older you get,the more it becomes who you are.Jon Dishon
Great to hear your story. As you say, although Coats is bad, it's maybe not as bad that many of us think it will be. From reading lots of other people's posts, it seems that it's the parents that have the hardest time dealing with it. I guess it can be lived with if the sight in the non-Coats eye remains good, which I know is not always the case.
What 'stage' Coats do you have?
Is your retina detached? (If so, is it complete detachment and when did it happen?).
If you don't mind me asking, how does your Coats eye look now?
Had enucleation ever been considered by yourself or your doctors or is your eye stable?
Since our son was diagnosed, with late stage Coats, I find the best information comes from real personal experience.
my son is 23 and we first found out he had coats when he was five but it was thought that he had been suffering from coats since his first months. He is totally blind in his right eye and he has total retinal detachment. Apart from a large cataract his eye looks exactly like his good eye. We where told 9 years ago that his eye was going "soft" but apart from the cataract it looks the same now has it did then. When my son was 15 he decided not to go see the eye doctors anymore when i tried to persuade him he would cry and refuse to go. He never had any treatment for his coats it was only when i came across this website that i realized treatment was available and that there where different stages to coats disease. We just used to go the his eye appointments and the consultant and a few other doctors would look at both his eyes and we would just get another appointment, if we asked any questions about coats we where told that it was rare and the only treatment they could give my son was enucleation if his eye became too painful. I have asked my son if we could try to get the cataract removed at first he cried but i think that he is considering it now. It would be lovely to see my son look face on in the mirror again has we know that the cataract really bothers him but this is the only time we have mentioned the coats to him in years because if we do he cries and refuses to talk about it
my son is 15yrs old, when he was 13yrs he had a throat infection and complained a few days later that he had lost his central vision,i took him to his gps who sent him urgently to the eye clinic who admitted him for 2 weeks thinking it was viral and could spread to both eyes, they took a biopsy and after lots of tests and no infection detected they eventualy diagnosed coats, as this is very rare there is very few cases in scotland, he continued to have peripheral vision untill the consultant decided to laser his eye to try to restore some central vision, that was over a year ago and he now has no vision at all in his left eye, he gets embarrassed because if he stares at anything his eye wanders and also it is whitish/red in all pictures, he was a fab goalie and had to give this up as he couldnt see players coming at the left, he found a passion in rugby, at first the consultant said he couldnt play as it was to dangerous then said he could play with special glasses which i bought but my son hated them, the consultant then said we couldnt wrap him in cotton wool so allowed him to play, he loves his rugby and is 6'2'' so a fab player, he is a happy boy and his blindness in the one eye does not affect him, we his parents are the ones left worrying (as it should be) it is true kids adapt easily, the school have been great and gave him extra time for exams and enlarged papers as he sometimes finds words can become blurry with his good eye. I just want to say i am so proud of how my boy has handled this horrible condition and how well he has adapted, the only sad thing is he cant be a firefighter as he always hoped to be as alot of these jobs will not employ or train partialy sighted people, but i am sure he will find a career to suit him and we will continue to support him all we can, i will contnue to worry about his future but with his attitude and great personality i am sure he will handle anything that is thrown at him, i hope there is a cure in the future. i have appreciated all information give on this site as it is a rare condition its not easy to find anything on it thanks
my son is 15 years old and we found out on friday that he has coats disease,for the last four years we had annual appointments to check the right eye because the optician had detected had some sort of mark in the back of his eye.We were always reassured that it was like a birthmark and he most probably was born with it.Last week we went for our routine annual appointment and were told that the mark had changed and from there on we discovered that this so called mark would then be named as coats disease.He has some degree of impairment to his sight and we have been told that he is in about Stage 2 of Coats disease.The course of treatment that he requires is laser,which will be done on friday.Worried Mum would like advice from anyone with any information on this disease affecting a teenager.We are from glasgow scotland and already have discovered that this is a rare disease and our consultant has only seen afew patients.Dear MS if you dont mind me asking did your sons disease progress very quickly?
Hi 786wm: Our optom also said to us that it looks like our son has a birthmark on his retina and referred us to an opthamologist who said it was Coat's. My son also is in the Stage 2 area of the disease and Dr states it is "mild" which appears to be the case of your son too. However our treatment is Lucentis injections and have had 6 injections so far with significant improvement. Dr didn't want to laser the central vision. We are waiting official results of an OCT shortly to see if more injections are required. Please see my posts under the header 'Lucentis Injections'. Maybe something to discuss with your Dr. if you haven't already. We will pray for you and your son. We are from Toronto.
