There are a few things that we have discovered through this website and through our own experiences:
When you read through some of the topics on our message board, you will see story after story of success in living with Coats' Disease. We have heard from people all over the world that have had very successful professional careers, very successful athletic careers, and great personal experiences. Our children have an amazing ability to adapt to the loss of vision in one eye, and we should encourage them to be whatever they want to be. Yes, the initial diagnosis of Coats' Disease was like a punch in the gut to our family. You will endure many frustrations with the medical community, the lack of treatments, and long hours spent in waiting rooms. Our children can, and will learn to adapt to Coats' Disease, and you will be surprised at some of the things that they can do.
One of the most critical missions you now have is to protect the non-Coats' eye. (Please, try to say Coats' eye and non-Coats' eye. I never say good eye, or bad eye) Your child should wear glasses with polycarbonate lenses at all times. You should have a spare set of glasses that your child can leave at school, in case they run off in the morning without them (Believe me, it will happen!) Your child should have protective goggles for any time they are engaged in anything athletic, anytime they are doing yard work, and for swimming. Your child may also have difficulties going down flights of stairs, due to a loss of depth perception. Whenever possible, I go down stairs in front of Jacob, just in case he has difficulties. Of course, they need to use hand railings if available.
There are multiple people that need to be aware of your child's condition:
- School bus drivers, and the bus monitor need to know that your child has reduced peripheral vision and depth perception.
- Teachers need to know about your child's Coats' Disease, so that they can make sure your child sits on the correct side of the classroom. Teachers also need to know, because other students will begin to recognize that your child's vision is different from theirs. If your child has cataracts (like our Jake does), children will begin to say things. Jacob's teacher sat the class around a computer one day, and brought them to this website in order to explain what was going on with Jacob's eye. You can encourage you child's teacher to do the same. (The only thing we gain from that is knowing that your child's condition will be better understood by those around them)
- Gym teachers need to know that your child should not be allowed to participate in contact sports without protective goggles (Rec Specs)
You need to be prepared for when you go to the Opthalmologist's office. You will have limited time to talk to the doctor, and you need to have your questions written down. Often times, your discussion with the doctor will lead to more questions, so take a notebook with you, and write them down on the spot. You can research terminology, or other questions when you get home. Please remember that no question is off limits. You will find that, at the end of the day, you are the only true advocate for your child. You will end up researching medical procedures, different treatments, and different Opthalmologists on your own, and we encourage you to do so.
After a while, your young child will figure out that, when he/she gets into the car to go to the doctor, he/she is going to get their eyes dilated (ouch). Try to make sure that there are enough distractions for the trip to the doctors office, so the ride goes faster. Our Jacob gets "tummy aches" when he knows where he is going. He used to get so worked up over it that he would need a bucket in the back seat, if you know what we mean! We bought him a portable DVD player, so he can watch movies on the way (it is an hour trip to the doctors office for us. I know that some of you will travel much farther).
There are some really incredible people that post on our message board. If you find someone that lives close to you, or goes to a doctor in your town, we can do email address exchanges outside of the message board. We all get way too much Spam now, anyway, so we don't want you to put your address out in the public domain.
If your child has normal vision in his/her non-Coats' eye, there is very little support available in the school system. We tried to get visual training for our son, but the school system does not consider him disabled. He has 20/20 vision in his non-Coats' eye, so he does not qualify for any help.
With vision in only one eye, your child cannot see things in 3D. Those silly multi-colored glasses we wear to see 3D movies will not do anything for your Coats' child.
If you have any suggestions for additional tips for this page, or for helpful hints that you have discovered, please let us know! You can use the feedback page to offer your suggestions.