Glaucoma mailing list. Personal stories

Sarah B

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My glaucoma is secondary to a condition called retinopathy of prematurity (ROP). Both conditions were diagnosed in my left eye and ROP in my right eye when I was five months old and had an acute episode. I don't remember being given drops during my early childhood, and my mother doesn't remember giving them to me.

When I was 8 years old, I had another acute episode in the left eye, and the drop regime was begun. At the same time, a huge cataract was discovered in my right eye, and my lens was completely removed. I experienced a significant improvement in vision in the right eye. The left eye was totally blind.

Over the years I began to take the stability of my condition for granted, forgetting about the drops for my left eye and not following up with exams for my right eye. When I was 14, I began to experience frequent periods of temporary vision loss. I was attending a summer program at the school for the blind at the time and saw a doctor in the town where the school was. The episodes were diagnosed as ocular migraine, and I began using an oral beta blocker. It helped, and the temporary losses of vision stopped. My family doctor at home permitted me to stop the medications because I was not having pain or vision loss.

In retrospect, this was probably the worst thing that could have been done. The next time I experienced vision loss, I was 19 years old and it was not temporary. I was very upset and had an exam under anesthesia with my retinal specialist, who had been seeing me since I was a child. That was when angle closure glaucoma was finally diagnosed and medication once again prescribed. My pressure was stable at 43, and I had no pain. After six months of unsuccessful treatment with medication, during which time I had experienced an unexplainable improvement in vision, I had surgery to get the pressure down as a sight-saving measure.

For a time after the surgery, medication was successful at keeping the pressure within the normal range. However, I once again assumed that no pain meant good news. I did not follow up with regular exams with the glaucoma specialist, and I did not take my medications regularly. By May or 1998, I had experienced more vision loss, and the pressure was on the rise again.

This time, medication was successful in bringing the pressure down, and the cause of vision loss was attributed to other factors--a partial retinal detachment and extensive damage to my cornea. These two things have been corrected with surgery, and I remain on medication for glaucoma. I now understand that this medication is something I will need to use faithfully for the rest of my life. It is not something to use only when I have an acute attack. In fact, I do not have acute attacks in the right eye. It is a means of maintaining stability in the eye, and failure to maintain that stability results in damage to the eye and vision loss which may not be temporary.

I have been very fortunate that my small amount of vision has been preserved. Neither ROP nor glaucoma is something to take lightly. One of my aims now is to help people to understand the importance of being proactive rather than reactive. I know many people who have lost their vision completely because of glaucoma. I know many people who have had their eyes removed because of excruciating pain caused by glaucoma. My hope is that people who have glaucoma or who are at risk of developing it will have regular exams and follow any instructions regarding medications as if their life depended on it. The life of their eyes does depend on it.

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