Charlene has suffered from keratoconus for over 9 years. Her journey has been a frustrating and painful experience. Today, she can see clearly through both her eyes for the first time in 9 years and cannot believe how effective the Keratoconus treatment has been. Read her story here.
Dear fellow keratoconics,
It is a pleasure to have this opportunity to share my journey suffering with this condition of kerataconus. I first noticed a problem with my sight from the age of 18 where I was severely short sighted (otherwise known as myopic vision). I struggled to see text in the lecture theatre, watch movies in the cinema and sometimes struggled to notice my friends on the street. At this point I booked an appointment at my local opticians and I was satisfied with the glasses they had prescribed for about a year.
From the age of 19, I noticed my eyes became increasingly irritable where I was constantly scratching, rubbing and removing discharge from my eyes. My friends and family noticed that I was doing this almost every ten minutes in front of the mirror. This reaction was understandably worrying. I also noticed my glasses were not as effective and I was squinting more frequently.
During the course of a few years, my glasses prescription changed several times, until one day my optician advised me that my prescription had reached the maximum strength. This was not sufficient for my sight and I was referred to an optometrist.
As you can imagine, I was quite concerned about the future of my sight. During my first appointment at the optometrist I was diagnosed with kerataconus, I was frightened because I had not heard of this condition. I was told the condition was severely advanced in my right eye and correcting my sight in this eye would be a challenge i.e. I could not even see text on a Snellen chart. I knew the future concerning my sight would be long and frustrating. This was particularly noticeable during my driving lessons.
The optometrist suggested wearing rigid gas permeable lenses (RGPs) in my left eye. It took me approximately one month to adapt to the RGPs as they were very uncomfortable, irritable and I slowly became sensitive to light.
For a couple of years, my sight was solely from my left eye. The optometrist trialled some RGPs for my right eye, however due to my degree of conning in the right eye, it was difficult to get the fitting right.
In the interim, the RGPs for my left eye managed to see me through the success of my driving test and generally getting by for 6-12 months. Soon after, the RGPs became uncomfortable (e.g. more rubbing). Eventually the optometrist showed concern about the disease advancing in my left eye. I was referred to an ophthalmologist in the hospital, who managed to design better RGPs that were bigger and more comfortable.
During several consultations the ophthalmologist introduced new treatment options, such as intacs and collagen cross linking (CXL). In addition, they even considered corneal transplantation for my right eye. This led me to carrying out further research on these treatment options. I learnt these options were not available on the NHS, so this team suggested I had the treatment options privately. Unfortunately, after ringing them an ample number of times, they never got back to me.
I returned home to London and continued to manage with the RGPs, in my left eye. It was not until I lost the RGP that I realised how much I was dependent on it so I began to research treatment centres for Keratoconus. I came across Accuvision who are renowned to provide optimal care for Keratoconus. I knew from my first initial consultation that I had definitely come to the right place. The staff was very friendly and definitely empathised with my struggle with keratoconus. They were very understanding, frank and trustworthy.
After thorough examination of my eyes the specialists at Accuvision suggested CXL for my left eye only as my right cornea was too thin for the procedure. The operation was done soon after my initial consultation. As you can imagine I was very apprehensive and worked myself up into a state, prior to surgery. However during the procedure the staff was very friendly and informative and the treatment was practically pain free. The first stage of the procedure involved cleaning the eye and administering local anesthetic, this was followed by scraping of the cornea, which lasted all of five minutes, then numerous drops or Riboflavin (Vitamin B2) and staring at a UV light for an hour. This ended with the placement of a bandage contact lens over the eye, which was kept in place for seven days. One of the first things I noticed after the operation was that I became extremely sensitive to sunlight, this effect was dampened by wearing UV protected sunglasses. Day one post op was pain free; I spent most of my time in darkness with my eyes closed. Day two post op I experienced quite intense pain and watering of the eye, this settled the following day. The staff at Accuvision was happy with the way the eye was healing and my vision was similar to looking underwater, which was expected.
Several weeks after CXL my left eye, the team at Accuvision wanted to focus on trialing out some RGPs for my right eye. Of course in the back of mind I thought there was no way they would find a lens to fit because of the issues I had in the past with previous optometrists struggling to find RGPS to fit the right eye. As the disease is so advance in my right eye I had no expectations. However, to my surprise and after several fittings of various scleral lenses, which are bigger and more comfortable than RGPs, I managed to see out of my right eye for the first time in years. I was very emotional and it was almost a miracle that they had accomplished this. As well as optimising my sight they suggested easing the comfort wear of the scleral lenses with putting a soft lens on first and then placing the hard scleral lenses on top. This technique is known as piggy-backing. I was highly impressed. The following week, they piggy-backed my left eye and for the first time ever, I could see crystal clear from both eyes. I could see objects and people around me in a different light. I describe this as previously looking through black and white television to now seeing things in high definition. This has been life changing for me, my family and friends, as living with this condition has been long and frustrating.
Now, I am more than satisfied with my vision and Accuvision have really impressed me with their approach, timing and highly skilled operation to optimise my vision. Living with keratoconus has been a long, frustrating and emotional journey but Accuvision have proven that with patience and determination anything is possible. Unfortunately, I definitely feel like there are many pitfalls in the NHS with diagnosing, screening and treatment options for keratoconus and there is a need for national combined efforts to combat the progression of this disease.
By Charlene Twum-Barima