Young people can get glaucoma too

Generally, Doctors say there is little need to alter your lifestyle when you have glaucoma. When you have been diagnosed with an incurable disease that you will have for the rest of your life, that means the taking of eyedrops, regular checkups with eyespecialists, and multiple operations, it is hard to believe that statement.

After the initial diagnosis, you may be in shock. You may be feeling frightened. I know I was. I was a teenager when I was diagnosed with glaucoma, a secondary glaucoma due to uveitius or irisitis (inflammation in laymans terms).

I found that the eye specialists talked in very technical language and I had a hard time understanding what uveitis (inflammation) was and what glaucoma was. At that time, the only thing I had heard about glaucoma was that old people got it and they went blind from it.

Years went by, before I really understood what it meant. I was lucky to find information on the Glaucoma Foundation of Australia. I contacted them and for the first time I was given an explanation in terms I could understand. They had a regular newsletter with articles on glaucoma written in laymans terms and a question and answer section. This all helped me to learn about the disease.

I went on drops, which controlled the pressure for some years. Then the drops didn't control the pressure anymore and I needed surgery.

Glaucoma surgery can be complex in young people as they body tries to heal over the additional drain that the surgeons put in your eye.

As part of the surgery, the doctors put a chemical in the new drain to stop the body healing it over, but there can be complications in that the external wound doesn't heal properly. This happened to me and another young fellow that I know.

For me, this meant that the surgeons, after two more operations had failed to help, had to use a special contact lens on the eye to get it to heal. All this, while anaesthetic is used is still not exactly pain free.

Coping with the stress of juvenile glaucoma is not easy. Its challenging enough to be a teenager without being told you have a degenerative eye disease.

A diagnosis of juvenile glaucoma means that you are referred to a childhood glaucoma specialist. In my case I was lucky in that an excellent specialist was within 300km. Still, thats a 3hour drive and when you have to wait to be seen, (and you always have to wait) the visit to the eye specialist can take another couple of hours minimum. A three hour drive home and you have missed a whole day of school. Your parents have missed a day a work, as youre too young to drive. In later years youve missed a day of work. This is fine when everything is going ok and you only have to visit once every three months or so, but when things are bad, you may need to go more often.

I found that most specialists waiting rooms have few reading materials of interest to adolescents. The best thing for me was to take my music with me. I can listen to music for hours. When you are in hospital and cant read or watch tv and have to lie in a dark room, then listening to music is perfect. My mum bought me some talking books on cassette when I was in hospital for the first operation. I was in hospital for about a month, so talking books were a great way to pass the time.

Currently I am in my 40's. I have lost some vision to glaucoma in one eye. I have had two surgical operations on one eye to put in extra drains. I have had laser surgery in the other eye and put drops in that eye to control the pressure. In my bad eye I have a cataract. The cataract started growing after the 2nd operation. I am pretty much blind in that eye and waiting for cataract surgery. Cataract surgery is generally simple surgery, but not when you have glaucoma, and are subject to chronic inflammation. Hopefully I can have cataract surgery this year and get some vision back.

I am night blind, so havent driven at night for some time. As I work part time, I can go in early and avoid coming home in the dark. Last year I fell down the back stairs at my parents place as the light wasnt on. These days, I try to avoid going out at night at all.

UPDATE

I had cataract surgery in April 2009 and all went well. I have vision back!! Its not 100% as I have debris from the inflammation blocking the sight a bit, but it is certainly more than I had. :))

I now have my new glasses. I able to see a bit clearer with these new ones, and the best news of all is that they help my night vision. I have started driving again at night - just locally. woohoo!

A checkup in November confirms that my vision in that eye continues to improve. For some time after the surgery my vision in the eye with the new lens was jumpy. That has completely settled down now. I have also noticed that I am no longer bruised down that side of my body, so my perception on that side is obviously much better as I used to run into things a lot. There is of course still a great deal of 'debris' from the inflammation which impedes my vision as it floats in front of my eye. Hey - but things are a lot better than they were :)