Keratoconus: My story, my life
I was born in 1986. I had a normal childhood with no problems regarding my eyes. I had perfect sight and never experienced any problems, until…. Early in 2000 my mom’s partner in business noticed that whenever I was doing homework I used to have my face almost directly in the books.. He then recommended that my mom take me to an optometrist to have my eyes tested… I received my first reading glasses. After that I went back every 2 years and every time I just received reading glasses. The optometrist only said that I have a lazy eye and that it is nothing to worry about. And that’s all I used throughout my whole High School period. I never had any troubles. I used to sit at the back of the class and never had any problems seeing what’s in front on the board or projectors. I finished my High School career in 2004 and still no eye problems…
In 2006 I started having really bad headaches and migraines which no doctor could give me a reason for… I was admitted to hospital under the supervision of a neurologist who then said that my headaches are the cause of muscles in my back going into spasm… He then sent me home with anti-inflammatory medication. Since then none of the medication helped for my headaches and every time I would say the cause is muscles….
In the middle of 2007, just after I turned 21 I went, as usual, for my eye test which I do every 2 years except this time it was bad news…. The optometrist brought to my attention that I might have a condition called Keratoconus and recommended that I immediately get a second opinion from an ophthalmologist. He referred me to Dr. John Graham who then confirmed that I do have Keratoconus but that he recommends I try to use RGP contact lenses to flatten my cornea. But… I am contact lens intolerant… I can only wear a contact lens for 5 minutes before my eye starts burning really bad and I get bad allergy attacks... So my optometrist tried a different kind of lens (scleral lens) but exactly the same happens…. Later in 2007 I was also diagnosed as a type 2 diabetic with an under active thyroid.
In 2009 my optometrist noticed that my Keratoconus is progressing really fast and that I am losing sight really fast... I only had 5% vision in my left eye… He suggested I go and see Dr. Graham again to see what can be done… Unfortunately my cornea is starting to tear and that my only option is to have a corneal transplant. So he put me on the emergency list for a transplant in July 2009. On the 8th of October 2009 I received a call from Dr. Graham’s office to inform me that I need to be in hospital on the 12th of October as they have found a donor for me. So I went for the transplant… Only a few days after the transplant I started showing signs of rejection and the doctor put me on cortisone tablets. This however did not work so he then started injecting medicine directly into my eye… Most painful experience ever!! So for the December my doctor went on vacation and he then said if anything happens while he is on holiday I must immediately go to the Pretoria Eye Institute seeing that they have an emergency ophthalmologist on duty. As it would be I once again showed signs of rejection on the 24rd of December so we immediately rushed to the Eye Institute.
Once we got to the Eye Institute I saw Dr. Kunzman, a retina specialist. He noticed that the current eye drops which I used is an antibiotic and that it was prescribed for too long and that it is starting to burn the new cornea like an acid which is causing much more irritation and rejection. He changed my current eye drops . After that I permanently went to the Eye Institute for my weekly check-ups.
In February 2010 Dr. Kunzman noticed that my cornea is not working at all and that the rejection is causing all the cells to die in the cornea so he suggested I have a meeting with the whole panel of doctors to see which treatment would be most effective for my eye. So one week later I had my meeting with a panel of almost 28 doctors including Dr. Cornelius, a cornea specialist. They refused to let me go home and immediately admitted me to the hospital for emergency treatment. From there on I received a pure cortisone drip every 3 hours over a 48 hour period as well as cortisone eye drops on an hourly basis. From there on I fell under the supervision of Dr. Cornelius.
In the time that I spent in the Eye Institute my doctor found that my right eye is also started to show that my Keratoconus is progressing. He then also found that the headaches that I have been having since 2006 is all because of my Keratoconus that was starting to develop.
In May 2010 I had Cross-Linking done on my right eye. My doctor said that I should not be too hopeful as the chances of my sight improving is extremely rare. I was lucky… My sight did improve after having the CXL done but unfortunately my left eye’s sight did not want to improve due to all the rejection damage…
Even though all this happened to me I am living a normal life. Yes I have normal struggles everyday, such as the blurry vision and I still struggle with headaches and allergies as well as my thyroid an diabetics. I decided not to let this affect my day-to-day life seeing that life is too short to spend worrying.
In 2013 I decided to get a tattoo on my left wrist to remind me of everything I went through. This reminds me everyday that I am a fighter and a survivor and that nothing will stand in my way of living my life.
I still go for my eye tests every year and am now wearing spectacles permanently. As for my diabetics and so on I am on a very strict diet to get that under control. The headaches still comes and goes and with my eyes I do have good and bad days but I am forever thankful for everything that happened as this is what makes me stronger.
This is my story… Anyone wanting to contact me can do so via Facebook.