CHRIS
“It has been a long time since I have gone in depth about my eye and Coats Disease. A lot of my friends don’t even know I have this disease. I did not know what to expect at the Jack McGovern Coats Disease Foundation conference in San Francisco, CA. What came out of it was amazing.
Being there and interacting with all the doctors who are doing research around the world was what I needed. Dealing with the disease for so long, I want to help out the next generation of people who are diagnosed with Coats Disease. It is something that I have dealt with for over 14 years and now it is time for a change. It is time to find a cure, find a way to help children with this disease.
At the convention, that is what was being talked about. It was wonderful to see doctors from around, the world all under one roof, talking about cases, explaining what procedures were done, hearing their thoughts on cures, prognosis’s, ideas, and also sharing stories about what they have seen work and not work. The cocktail on Saturday evening really got me wanting to do more, after talking with the doctors on a one on one basis. This is a disease that is not talked about, very few people know about it, and something that most people don’t even know exist. With everyone working together, sharing stories, and idea, this disease is something that will have a cure. It takes time and money, and raising money for research is what needs to be done. I for one will be raising as much money so the next generation can live Coats Disease free.
I want to say thank you to the McGovern family who’s hard work and determination, has brought everyone together. And a big thank you to all the doctors who came to the conference and their efforts to finding a cure and ways to stop Coats Disease.”
FAQ
At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.
-
Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:
How do you know that this is Coats’ Disease?
Has your doctor treated other patients with Coats’ Disease?
Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.
-
What Stage of Coats’ Disease is he/she in?
Will his/her vision get worse over time?
Will the eye have pain?
Will his/her eye start to turn out? Is muscle corrective surgery an option?
Are cataracts likely?
How likely is glaucoma? (due to retinal detachment)
Is there calcification?
What is the anticipated disease progression?
-
Is there a thorough vision exam available?
Where is the vision affected? (central/peripheral/distance)
Does he/she have depth perception? (3D visibility)
What about the non-Coats’ eye?
To what extent is his/her vision affected?
Will we be able to use this as a baseline to measure progress/decline?
