Experimental injection for Coat's Disease. (Rare disease which can cause blindness)

[4amorphotos]

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[353nan]

My son has had Coats Disease for 27 yrs. When it was diagnosed there was nothing they could do for him. He lost all vision in his Rt eye and now has a secondary cataract. Will the injections help since it has been so long. Who does he need to contact, he lives in the Nashville, TN area. Thanks and God Bless

[BrandonMSherman]

@353nan The procedure is designed to prevent the progression of the disease. I don't think it would have any effect on your son, sadly. It didn't even do anything in particular to me.

If you have questions I would call the Shiley Eye Center in San Diego, CA and ask to talk to Dr. Henry A. Ferreyra, whom I highly recommend.

[353nan]

@BrandonMSherman

thanks for the quick response. I will call today and see what I can find out. I haven't even mentioned this to Jesse, don't want to get any hopes up.  What about retinal implants for Coats Disease. He was also diagnosed with Type I Diabetes when he was 22 and is on an insulin pump. No one wants to think of the worst down the road, but two eyes would be better than one if there ever was a problem. I pray that they can come up with something for all of you. Again thanks

[jakedrood]

Heyo. So yes i had the laser treatment on Thursday, so quite a while ago. I didnt havea stress ball or tylenol but they gave me drops to dilate my pupils and a different drop which i think numbed my eye a bit. The laser treatment i cannot say is the most pleasant experience of my life. I agree its VERY bright but it wasnt that bad till half way. Then each burst of light was like a hard sting at the back of my eye. I think my vision has slightly improved so i'm hopeful. Good luck to you too!

[jakedrood]

I was diagnosed with Coat's Disease 3 days ago and I'm about to go through my first laser treatment in 8 hours. I'm 18 and unfortunately, my retina did detach. This really sucks :\

[BrandonMSherman]

@jakedrood I know how rough it must be for you. Just know that you're not alone, and I hope you're in good hands. Hopefully your first treatment wont be as intense as mine was. Ask for Tylenol and a stress ball if they have them. The hardest thing to do is hold yourself still and look where they want you to. it's very bright. Please update us as to how it went!

[BrandonMSherman]

@jakedrood Just noticed that it was 4 days ago. What happened? Update? I go in for another tomorrow as well.

[adambrowntv]

I have coats disease and I've had it since I was 2

[DidntKnowWhatToPut1]

my brother has coats disease, and now I'm getting symptoms.

[BrandonMSherman]

@DidntKnowWhatToPut1 What kind of symptoms are you getting?

[209116032]

you are very brave for going through with this. if it were me i wouldve punched the doctor in the face. hope everything went well. you are very handsome btw. :P

[fanovu]

how did this go???

[BrandonMSherman]

@fanovu It went well, but sadly the medication really didn't do anything to help slow or stop the progression of the disease. We'll be keeping an 'eye' on things and 'see' how they go. check ups every 2-3 months now, =/

[castros3222]

BrandonMSherman, you may need several of these treatments and there is other treatments available. Please read all the facts and available research on Coats Disease because you will need to stay on top of this. My 7 year old son has this and we have been able to a least stop the progession at this point. Respectfully, Steve.

[castros3222]

Hello BrandonMSherman, my son has shown slight visual improvement. He gets Avastin injections as well as Cryo and laser treatments. Treatments may or may not work, but we are optimistic. We wish you well, and please don't give up. If your retina is still attached and you have no pain there is hope. please eat foods good for the eyes ie. spinach, carrots etc. Take care and God speed.