BRIAN

I was diagnosed with Coat’s Disease when I was 14 years old, very traumatic at that age, but as time passed, I became more accustomed with the situation. I learned to drive at 17 and 6 months later passed the driving test and was retained in employment with a local bakery as a driver/salesman. No one realized that I could not see in my left eye. I didn’t feel any different to other people once I had naturally adapted to various initial annoyances, (i.e. misjudging simple things, picking up a fork and missing it).

As time went by, a very large cataract developed, the eyeball became bloodshot and the iris was just like a little silver ball. Gradually, pain developed, and became excruciating. On several occasions the doctor was called during the night and morphine injections were given. This was during my mid 20’s. I was prescribed tablets to relieve pressure and a strong tablet for the pain. Pressure behind the eye is hard to describe.

I underwent various tests during the 14 years before I was asked by an ophthalmic surgeon to consider enucleation. He advised that I go away and consider for two weeks explaining that the eye was no good, it had died.

That was a Monday, I explained that there was no need to consider. I was admitted to hospital on the Wednesday, operation Thursday, resting Friday, home Saturday.

After one week, I returned to the hospital to have a shell fitted into socket, (removable), that was intended to keep the eyelid in shape. They said that it may take two or three months before prosthetic eye was ready.

I decided to go back to work after 10 days after touring various pharmacies in search of a black eye patch.

Good move, bad move. 20,000 questions – “What have you done to your eye?” and 20,000 various replies.

Nevertheless, after all these years, I often contemplate on the life that I have lived and sometimes consider that I have been gifted. I see things in a way others may not. It says somewhere in the bible that in the kingdom of the blind the one-eyed man is king. I have many friends who are totally blind and they can see more clearly than I can. It’s hard to describe.

Just to finish off, I will shortly be 74 years old, I still drive every day, almost 57 years with a clean driving license and no accidents. I was a keen cyclist, karate student, folk singer, poet (6 books), gardener, served 27 years in British Civil Service, waiter, active member of the British Red Cross, Blackpool Tram Conductor, Milkman, Paperboy, etc.

There is another verse in the bible:- THE LIGHT OF THE BODY IS THE EYE, AND IF THINE EYE BE SINGLE THEN THINE WHOLE BODY SHALL BE FULL OF LIGHT. God Bless You All

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.

Questions to Ask Your Doctor (Download PDF)

  • 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?

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