A huge thank you for Liz for taking part in the 'A Look Into' series. Liz has shared her experiences on living with glaucoma, so please take a read below...
What is your diagnosis?
Primary Congenital Glaucoma. With this type of Glaucoma, the drainage systems in the eye do not develop correctly in a baby, so the fluid in the affected eyes continues to build and cause damage to the optic nerve causing vision loss and blindness.
How long have you been diagnosed for?
I was diagnosed at 7 months old. I am 33 now, so 32 years.
What were your signs and symptoms/how did you come to be diagnosed?
My mom said that my right eye was continually red, enlarged and had symptoms similar to pink eye. I would sit up in my crib and scream at night. Doctors told her later it was probably because the pressure had risen so fast it was causing pain. She took me into the paediatrician several times and they kept brushing it off as pink eye. She finally took me in to a doctor that noticed the problem right away and sent me to a children's hospital 4 hours away.
Had you, or anyone around you, heard of your condition before you were diagnosed?
No, my condition is rare in children. My doctor in Salt Lake said that my case was a particularly difficult one. I have it in both eyes, but my right eye has always been more stubborn than my left.
How does the condition affect you?
I have lost most of the vision in my right eye, but fortunately I can still see well through my left with correction. My depth perception is terrible. I am constantly running into things on my right side. My peripheral vision is non existent in my right eye. I had mostly adjusted to my vision loss and did not notice it too much until this last year. I woke up completely blind in my right eye. Upon going in to the doctor, they found that the Bleb (shunt) they had put in my right eye when I was 5 had become infected. I had to have several antibiotic injections and fluid drawn from my eye. They were able to save it, but since that has happened, the pressure in my eyes has once again risen. Each day my vision varies. I get a lot of headaches and am dizzy by the end of the day trying to balance one eye with very poor vision and one with excellent vision. It sounds silly, but I am absolutely exhausted by the end of the day. The medication I am on makes my eyes red and dry. By the end of the day I look like I am high because they are bright red. I am very sensitive to light. It all comes out in a star pattern and it is difficult to drive at night because of it. I do a lot of running to keep myself in a good mental place. It is easy to sit and wonder how long I will be able to see and worry about watching my children grow up.
Have you had/been able to have or try any treatments at all?
I had several different surgeries starting wit the first at 7 months old. I have had 2 this last year to save my vision from a nasty infection I got. One surgery was a vitrectomy, to clean the inside of my right eye out. The second surgery was to put a new shunt in my eye because the drain in my eye was damaged by the infection. I am on 5 different medications to help with my pressure and inflammation in my right eye and one to manage the pressure in my left.
What would you like others to know about your condition?
Even if I can't see as well as you, I am still more than capable of living my own normal life. Don't be afraid to ask questions about my condition, I am more than happy to answer them. Lastly, get your eyes checked REGULARLY! Glaucoma is the called the silent thief of sight for a reason! Most people do not know they have it or have any symptoms until it is too late! Once your vision is damaged it is too late and there is not way to get it back. Your eye site is one of the most precious things you have! Losing it is devastating!
Do you have any advice for newly diagnosed people?
It is hard, but you are capable of more than you know! There will be good days and bad days, but you will come out stronger. You can do anything you put your mind to! Don't give up on any of your dreams because they are absolutely possible! Surround yourself with people who love you and let them help. There is no shame in having to do things a little differently others. The chances are, you will learn to do those things and be able to do them even better than some who do not have your condition! Find a great doctor who will listen to your concerns and is willing to help you. There are some amazing ophthalmologists out there!
Liz has made a collage of nine pictures, three across and three below. This picture description explains the images from left to right, one row at a time.
Picture one (top left, first row): Liz has taken a selfie in a car. Her blonde hair is down and she is wearing a grey jumper.
Picture two: A black, male patient (left) and a white, male doctor (right) are bowing their heads together and smiling. The patient has a a clear eye patch hanging off his cheek and the doctor is wearing glasses with surgical loupes attached.
Picture three: A close up of Liz's blue eye. The centre of her eye has a cloudy patch.
Picture four (second row): Liz has taken a selfie and is giving a thumbs up. She is wearing a surgical patch over her eye, which is taped to her forehead.
Picture five: A picture of eight eye drop bottles and three pipettes of eye drop solution. In the middle is a grey square with a quote reading 'Difficult roads often lead to beautiful destinations'.
Picture six: Another close up of Liz's eye. It looks bloodshot.
Picture seven (third row): Two white, male doctors are stood together with their arms crossed and wearing blue medical uniforms.
Picture eight: Liz has taken another selfie with a surgical eye patch on.
Picture nine (final image): Liz has taken two selfies which are side by side. This image is the same as the image used earlier in the article.
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