I am a parent of a Keratoconus sufferer

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.

4 thoughts on “I am a parent of a Keratoconus sufferer”

  1. Hi there,

    As a KC sufferer who struggled to get a diagnosis from the age of 12 I can totally empathise with your daughter and will you as my parents went through exactly the same angst about feeling it ws their fault etc.

    First advice to anyone who has children who are having similar problems with diagnosis is not to go to certain high street opticians. Some do not recognise KC or if they do they do not refer to eye hospitals because they can see a steady income from contact lenses etc. I would stick to opticians such as Boots or D&A who I have always found reputable.

    At 15, when I was finally diganosed i was facing a grim future with prognosis being transplants for both eyes by mid 20’s. The good news was that my KC slowed down significantly as I hit my 20’s and therefore I was managed via gas permable (back in those days there were not alot of options) until older age hit (40 ish) when my eyes became too dry. My consultant and I agreed that I needed to go back to glasses full time and we discussed whether it was profitable for me to stay on the NHS list as there was nothing but monitoring they could do for me – as an NHS worker myself I decided discharge was best so the hospital could see those that they can help. At that point I did my research and found that Boots are well versed on KC and have been with them for many many years now.

    With regard to your daughters dry eyes at night, have you tried a humidifier next to her bed or her putting in drops throughout the night? It helped me.

    Now in my 40’s I am more settled with my glasses and read with interest the work that Liverpool Uni are doing around lenses for glasses – cannot wait to hear the results.

    Soft lenses are coming on leaps and bounds which maybe an option for me next time I see my optician at Boots.

    I do hope this helps a little.

  2. Hi David, just reading your post and you talking about your daughter I feel like I’m reading about myself. The only difference being is when I got diagnosed with it back when I was 14 I made regular visits to the hospital then when I hit 18 I let bad demons take
    Over me for a good few years I’m now back to my normal self ( now 27 ) and my eyes are awful. No one seems to understand the condition and it makes me feel so isolated at times, the constant squinting and people saying to me put your glasses on. Glasses do nothing for me, hard contact lenses had no effect on me. I have my referral in February 2021 so I’m hoping they will help me and hopefully get my confidence back.

  3. I came upon this website looking for advice. Iam beyond heartbroken about my 25year old son and his kerataconus. Diagnosed when he was 17 (while I was going through a messy divorce) his ophthalmologist took so long to initially see him then didn’t have the equipment to do x linking a year later got the machine and he wasn’t able to keep still despite 4 lorazepam. They decided to wait to do him under general anaesthetic and by that time one eye was too risky to do. So one eye was done. Meanwhile he was able to achieve masters degree in advanced biomedical science. He eventually got a job in a lab without disclosing his visual condition. He was there 6 months then sacked as he was a health and safety risk ( a week after his grandfather died ) he now is going for numerous interviews and when he tells them why he was dismissed from last job they are not interested. He is so demoralised. Tried and failed with scelerals. Unable to drive. Lost contact with friends and never had a girlfriend. He feels his life is over.

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