Being a parent of a Keratoconus sufferer

[Cassandra82+]

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.

[Anne Klepacz]

Thank you so much for posting your story here, Cassandra. When I started reading, I assumed your daughter would now be at least in her late 20s and that the failure to refer her to a hospital eye clinic happened at least 10 years ago. So I was shocked to read on and find that it was so recent. No wonder you're angry when a referral at the start of all this could have meant your daughter could have had cross-linking to stop the progression. But please don't feel guilty - none of this is your fault. The medics reckon that around 15% of KC is genetic (but needs a number of different genes to come together) and the rest is 'random' with researchers unable so far to explain why some people seem to be susceptible to the condition. And I'm so glad that your daughter is now getting the care that she needs.
As for the future, a corneal transplant may not be 'inevitable'. Before the introduction of cross-linking, up to 20% of people with KC ended up needing a corneal graft. The other 80% managed with contact lenses, and eventually their KC would stabilise with age.
But while KC usually progresses slowly, some teenagers seem to develop a more aggressive form of the condition with deterioration being faster than usual, and it sounds as though that's what happened with your daughter. But even if she does eventually need a transplant, the way transplants are done is constantly improving. Most grafts these days are partial grafts (DALK) which are much less likely to reject and last considerably longer than the full grafts that used to be more common. Meanwhile, Brooke is clearly doing really well with her lenses, and if the Ken that she's seeing is the same Ken that many of us here know, then he'll definitely do everything in his power to ensure they continue to work well for her.
The sad thing your story demonstrates to me is that there are still High Street opticians who haven't taken on board how important an early diagnosis of KC now is and how important it is that youngsters with the condition are referred to a hospital eye clinic where they can be offered cross-linking (CXL) if their KC progresses. And while that was just about understandable 10 years ago, when CXL was only available in a handful of hospitals, the situation has changed a lot. So I'm grateful to you for posting, because I think our charity needs to try to get this message of early referral across to optometrists up and down the country. Meanwhile, all the very best to Brooke with her nursery nurse training.

[John Smith]

Hi Cassandra,

I just wanted to write a quick note to agree with everything Anne wrote, and to reassure you that Brooke is not alone. It sounds like you're in the right place now; and I share your frustrations that this was not identified sooner.

As Anne said, most people with KC don't eventually need a graft these days, so it is by no means inevitable. If we are talking about the same Ken, then I know he'll do everything in his power to keep Brooke away from the surgeons for as long as possible.

Just remember that you've found a friendly bunch here who will always be able to listen when you need to let off steam.

All the best to both of you,

John

[DavidGable]

As your story is so important, I have taken the liberty of publishing it as a blog post on our website. It will appear at the top of the side bar initially and then be searchable under "Member Stories". Please let me know if you want me to remove it.

Thank you for sharing

David Gable
Chairman

[space_cadet]

Your daughter is so blessed to have you on her side cheering her along from the sidelines, but I am so sorry for allt he anguish she has experienced but pleased to hear that things are now going more positivley for her.

Wishing you both all the best x