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View Topic "High Eye Pressure"

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Posted By: Mark
Total Posts: 2
Joined Date: 16 Nov 2004
Is there anybody out there with a baby with congenital glaucoma. I have a 13 month old boy who has this condition and has had 2 trabeculotomies and numerous examinations under anaesthesia. He needs to wear little spectacles but we are struggling - he hates them! It would be great to liaise with anyone else who child has the same condition. It is so rare but there must be somebody who is going through a similar experience.

Rosalie

This message was considered so important that we have moved this thread into it's own discussion area.

Tom Berry
Director of Development IGA
Posted : 16 Nov 2004
Posted By: connor
Total Posts: 1
Joined Date: 16 Nov 2004
I have had congenital glaucoma since i was born in 1972, my left eye is enlarged and i can only see colours and some shapes. I have had many cosmetic operations at Morefield eye hospital, London, under the consultant Mr Rice. It has done wonders for my vision but not my appearance, i have had 4 children which of non have had any symptoms. If i can help in any way please get in touch, Darren.
Posted : 16 Nov 2004
Posted By: wiganlee
Total Posts: 2
Joined Date: 16 Nov 2004
I was born in 1969 with congenital glaucoma and would gladly help if needed. There has been no history of the desease in the family previously or since my birth. I was only diagnosed at the age of 9 months so things have never been good for me. I have had seven operations, six of them between (9months and 18 months) I know times have changed so much and there is a lot more help for suffers now. However let me know if I can answer any questions
Posted : 16 Nov 2004
Posted By: Wendy
Total Posts: 1
Joined Date: 16 Nov 2004
Hello Rosalie I am the mother of an eighteen year old daughter who has Congenital Glaucoma who has been under the care of Moorfield's Hospital since she was diagnosed at six weeks of age. I vividly remember how difficult the first two years were especially when having to attend the hospital at such regular intervals. She had many examinations under anaesthetic and operations which included Trabeculotomy and Trabeculectomy. In those early days I used to feel the future looked very bleak - how wrong I was! Ruth flatly refused to wear her glasses when they were prescribed when she was three, she wouldn't wear them at school and although we knew that she was very shortsighted and needed them she would say they made her see funny. I guess she preferred the vision she was used to with out them. It was a different story by the time she reached the age of 12 and started to wear them constantly. She has acheived a great deal over the years and recently been to Australia as part of her gap year and will be going on to university this year. There were many questions and issues that I needed answers to in the early years and I found that by talking to other parents was so beneficial. Please e-mail if you wish and hopefully we can chat further. Wendy
Posted : 16 Nov 2004
Posted By: lynsey
Total Posts: 7
Joined Date: 16 Nov 2004
Hi Rosalie I am glad to see congenital glaucoma as a topic, hopefully it will encourage the list to be more active. I have a young child with congenital glaucoma and she has has multiple operations and surgery continues. She is prescibed glasses for shortsightedness but the glasses cannot correct her vision fully as she has low vision and needs to bring items close for a clearer picture. She has never liked to wear them, she has had so much done to her eyes, so was reluctant to start. At the moment, we can get her to wear them for very short bursts but she looks over the top and she takes them off to look at something! I am not sure how much benefit she will get out of them but perhaps they will help her to focus when she gets older. We have recently got her a low vision aid, which is a magnifier dome and she has a CCTV which enlarges pictures and print (although at 3 she isn't reding yet!) and we are also introducing her to braille. She is registered blind but has useful vision especially close up, many of the other patients at moorfields have more mild visual impairments and many make good use of their glasses. Where do you take your baby for treatment? Please post again if you want any support, i haven't been on this website for ages and ages, but will try to remember to check if you have posted again.
Posted : 16 Nov 2004

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