So I am a parent of a Keratoconus sufferer. Since she was diagnosed at 16 I have struggled to understand what my daughter goes through on a daily basis.
I have wanted to post Brooke‘s experiences so often but it never felt right.
Now I want to tell her story and hopefully it can resonate with other sufferers.
Brookes condition was missed by so many optometrists for years I still feel so much anger. As a mother of a sufferer I think I will always blame myself. Did I do something wrong when I was pregnant. Was my daughter being punished for my misdeeds. I know these are irrational thoughts but I can’t help feeling guilty. We was told at 14 that she had a stigmatism in one eye. Big deal at the time but looking back so trivial. She was given glasses. I thought great, my daughter will be fine. She told me the glasses made no improvement. I’m ashamed to admit I was annoyed. I just wanted her to see properly. This went on for another year. Little did I know that so bad was the condition that in class Brooke would ask her friend sitting next to her to tell what was on the board.
At 15 we went again to try glasses at vision express, my desperate hope that she would get the right lenses. There we were first told that Brooke had possible Keratoconis. I was relieved, maybe something could be done. We were told that she needed specialist contact lenses. I never questioned them and didn’t realise how severe the condition was. They made it seem like it was not a big deal. I was naive and ignorant. I sold my car to pay for these £500 RPG lenses. I was so happy that I could fix the problem. Brooke could see better and we both kinda ignored the problem. A year and a half later Brooke had an eye injury and we went to Queens hospital, Romford. Everything changed in that instance. They did eye exams and were shocked that she hadn’t been referred by vision vision. I was told just how serious the condition was by the doctor. In ten short minutes Brooke was told that she could never be a police officer, her dream job. That she would not be able to drive at least for years and maybe only when she a cornea transplant. We cried unashamedly together for what she had lost.
The only blessing being she would now be under the care of the NHS. We met a wonderful man called Ken who specialises in lenses. He has changed my daughters life and I’m eternally great full. I finally felt that people cared about Brookes vision. She was given new lenses and I only paid £130 for them as it was on the NHS.
Having done research after this visit I was hopeful that cross-linking would slow done the process. Brooke then had another blow when we were told by the consultant that it would not work as her eyes were so bad.
Now my 19yr old daughter has two jobs. She is an apprentice nursery nurse and works part time in a chip shop since she was 16. Some days she works 16 hours and wears her contacts all day. It’s amazing as wearing them so long doesn’t hurt her eyes. Most mornings tho she wears sunglasses to work because her eyes are so red and sore. We think it’s because where her eyes have changed shaped they don’t close fully while she is asleep. So they lose moister and dry out very easily. Which I have learnt is something very common with sufferers. We know have a waiting game, the inevitable decline of her sight when it’s time to a transplant. Both wanting it and fearing it because of everything that comes with a cornea transplant. The possibility that her body will reject it, the healing process and knowing that we go through it again in 20 years, also our desire that her vision will improve. Because of this forum and reading people’s story’s I have been able to be closer to my daughter. I’ve learnt what she is seeing. I can’t express what this has meant to me.
My daughter has a life time of stress and hardship ahead of her because of Keratoconis but I also think that it has contributed to who she is today. An incredible, strong, caring, beautiful person that suffers so much every day but never complains. Like every mother I think my daughter is the most wonderful person in the world. In reality and to every one she meets she’s just an ordinary teenager making her way in the world and Brooke being Brooke that’s just how she likes it.