Having keratoconus isn’t the end of your world!

Hi all, I'm an 18 year old teenager soon to be an ex-keratoconus patient (hopefully) and I live in the UK. Around the age of 15/16 I started to lose my vision and I no longer saw the world clearly. As a stupid teenager I didn't think much of this and I re-insured myself my vision will be back to normal with glasses or contact lenses.

However, keratoconus has tested me in every way as it has taken me to places I’d never imagine of going to and most importantly it has made me a stronger person. During the first year of my a-levels, I began to rub my eyes which became an awful habit that destroyed my eye sight and I lost a great amount of vision. Because of this I used to wake up with a swollen eye socket and it is here when hallucinating began. My self esteem levels dropped and I shut myself of from the world, I no longer spoke to anyone as I felt like I didn't fit in anywhere.

Having keratoconus isn’t the end of your world!


Furthermore I used to hate turning up to class because no one was aware of my eye sight as I struggled to see the white board or the information in the texts books. Instead I used to ask the person next to me to hand me their book so I could copy what they had written. From all my classes, I felt like everyone including the teachers hated me because I felt like an unintelligent pupil who paid no attention in class but little did they know every second passed was a challenge for me. When it was time for the students to read an extract from the novel, I can remember I used to hide behind the book and pray to God my name wasn't called out to read. Like a blind person would say, I felt alone in a dark world and spent most of my school days in bed.

My parents decided to take me to local family opticians and have my eyes tested and he referred me to BRI hospital for further check-ups. It is here where I met Dr. Khan (consultant optometry and head) who diagnosed me with severe keratoconus in my left eye and minor keratoconus in my right eye just a day before eid (religious festival). I was referred to one of the largest provider of specialist hospital ophthalmology services supported by a large multi professional clinical team in the Yorkshire region (St James).

When I first heard the word keratoconus,  I honestly didn't think much of it as I knew there were people out there with more serious problems than what I was facing until my doctor told me ”it’s a progressive disease and there isn't anything to slow the disease down”. At that time I knew the vision in my life eye was degraded and the vision in my right eye was better but because it was a progressive disease the first thoughts that came to mind was “am I going to be blind? Will I be able to see clearly again?” and I began to research for reinsurance.

In December 2014, I had my first cross linking experience and I would honestly say it was the best decision I’ve made so far in my life as my right eye has improved significantly! In March 2015 I had a kera ring placed in my left eye and in October 2015 I have had my final cross linking procedure (hopefully) done (5 days after writing this post). Both kera ring and cross linking has resorted my vision back in my left eye. However the experience with cross linking is much more  painful, it takes up to several days for your eyes to adjust to light but in the long run it is totally worth it.

Although I will never have 20/20 vision naturally, there are always contacts or glasses to help to resort more vision to see well. In a way, I’m grateful for having keratoconus because it has made me appreciate my eye sight more and it has made me into a stronger person. Like someone once said, “there’s always light at the end of the tunnel”. I used this experience to bring out the best of my abilities, I fought against it and most importantly I carried on with life. Having keratoconus isn’t the end of your world but it’s a new adventure, use it to bring the best of yourself and I promise you will see light at the end of the tunnel.

Never give up in life, regardless what comes in your way because it will only make you stronger #motivation.

The above story was shared by Maria Rafiq (@mariar920), one of our readers.

4 comments:

  1. Thanks for sharing your story. Good luck

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  3. Maria sounds dreadful way to go through schooling. So brave of you to share this. Sounds like your current procedures are returning you to decent sight - which is great. I wonder at the power of modern medicine. I don't want to put a dampner on your understandable joy and gratitude for restored vision. I too have KC and have done for many years. Mine was corrected by corneal grafts... which was not as bad as you may imagine. My doctor told me that you are never 'free' of KC. You will continue to need to keep regular checkups to ensure everything is still stable. Maybe you'll never need any further surgery but please do remember to keep getting your eyes checked (by a specialist: I don't mean a High Street optician) to ensure all is still good. You'll remain familiar with your local hospital. BTW Hope your A-levels went okay

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  4. All the best to you!! Your story is very similar to my sons! He is doing well too! πŸ˜€πŸ˜€

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