UK Keratoconus Self Help and Support Association
“Our son, Iain, had been struggling for some considerable time with what he took to be short-sightedness for many months, ie looking very closely at computer screens and books etc. As parents (although our son was in his late twenties), we finally persuaded him to visit the opticians for an eye test. This revealed that he had suspected keraotoconus in both eyes and he was referred in 2001 to the eye department of the Royal Victoria Infirmary (RVI) in Newcastle.
Tests revealed that the optician’s diagnosis was correct and that the keratoconus was advanced in his right eye and at an earlier stage in his left. We all felt, as a family, that we should jump onto a rapid learning curve and find out as much as we could about the condition. It was at this point that we found out about the Keratoconus Group and the important role they play in helping and supporting sufferers. Iain’s local optician kindly spent much time explaining to all of us what the future management would be. The staff of the Eye Department at the RVI were also very supportive and honest about the condition. Although naturally worried, this frank yet sympathetic approach was appreciated.
Interestingly, and really at this stage, anecdotally, my wife and I had been aware that for a few years, Iain had been rubbing his eyes quite a lot and did seem to have difficulty with bright lights. Many childhood photographs show him using his arm to shield his eyes from direct sunlight. We also discovered that there appeared to be a higher incidence of keratoconus in asthma sufferers, the latter having been the case with Iain from the age of 14.
With regard to his treatment, he was issued with a pair of spectacles, which did initially help his overall vision to a certain extent. He also was issued with various contact lenses over a period of several months. Unfortunately, due both to the steepness of the cornea particularly of his right eye, and his reluctance to keep squeezing all these various types of lenses into his eye (fear of further eye damage), he quietly abandoned this approach. Throughout the year 2002, the support he was given by the optician in the eye department to accustom him to the lenses was very good, but the decision was reached by the consultant that really the answer was to go for a corneal graft in his right eye. Basically, he was told that the right eye had anyway deteriorated so much, that the operation was the only answer.
At Christmas 2002, Iain developed a stye and a nasty eye infection in his right eye. The RVI optician immediately gave him chloramphenicol eye drops. This did not clear the infection (unfortunately delaying the damage the infection was causing the eye). However, gentamicin did do the trick and the infection subsided. At the same time, because the cornea of his right eye was so thin, with hydrops developing, the situation was becoming fraught. An emergency graft was discussed (reluctantly), but to stabilise things and to allow the hydrops to heal, a ‘bandage’ contact was placed over the cornea. Iain was also issued with viscotears and saline to assist healing. He returned to the hospital very regularly for the next 8 to 10 weeks for monitoring.
It was during this critical period that we decided to pursue a more holistic approach to the problem! We discovered that bilberry extract was rich in anthocyanadins (plant flavonoids) and that it is these which act on collagen, for example in blood cell walls, and thereby strengthens them. The logic behind this (if indeed it is logical) was based on the knowledge that the structural proteins of the anterior stroma of the eye are collagens. Our thoughts were that they may be a real benefit in giving a ‘collagen boosting’ natural product. As well as bilberry, Iain also started to take a product containing phyto-nutrients and anti-oxidants for example lutein and grape seed extract. A natural product called ‘Eyebright’ or ‘Euphrasis’, which is known to be anti-inflammatory in relation to the eyes, was added to the list of natural products together with multi-vitamin tablets, zinc and vitamin B complex. Poor man, he felt his stomach was rattling!
As the weeks progressed, Iain noticed that his eyesight was improving in his right eye and his vision generally was unquestionably better. Regular eye tests at the hospital were confirming this. The hydrops was also healing. With glasses alone, Iain was now able to read books again and had no trouble with bright lights etc. After about 2 months, the bandage contact (a soft contact) was removed and the consultant was very happy with the situation. He admitted that the recovery in the right eye was quite remarkable. In July last year (2003), the consultant basically said that a transplant was not now necessary and did not need to see Iain again for a year. He also confirmed that the gradual deterioration in his left eye had halted.
Iain has now reached the stage where he can generally go about his daily business without the need for glasses but he tends to wear them for protection. His vision is not perfect with or without glasses and he does not, therefore, drive. But compared to his previous situation a couple of years ago, the difference is astounding.
Could we, in ending, please pay a big tribute to the Keratoconus Group for their help and support over the last two years. In particular, to Anne, with whom I have had many long conversations and who has listened patiently to my concerns and who has been so generous with her time.
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Page last updated: 19 February, 2015