UK Keratoconus Self Help and Support Association
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Keratoconus (KC) is an eye condition, where the cornea, the front surface of the eye, thins and becomes distorted, often forming a cone shape. This affects the refraction of light into the eye and if the condition progresses, can affect visual acuity.
Every case of KC is different, but a few generalisations can be made. Some people with KC get good correction of their sight with glasses. However hard contact lenses of various types are usually required. Often good correction is achieved for many years with lenses. If the condition advances, it may become increasingly difficult to fit normal hard lenses due to the cone shape of the cornea. Another option for some are scleral lenses. These are large conical lenses, which cover most of the front of the eye.
In addition, many KC patients may also experience atopic conditions, such
as eczema, asthma, hay fever and chronic allergic conjunctivitis, which can
make lens wear difficult and painful. Dust, wind, pollen, smoke and air conditioning
can also create problems. All these things can reduce daily lens wearing time
and thus the
time with good vision. Some people with KC juggle a variety of different lenses and glasses over the day in order to manage work and studies. This takes time and effort, maintaining cleaning routines and hygiene during removal and insertion.
Sometimes surgery becomes necessary and corneal transplants are carried out. The recovery process from this takes time, as stitches remain in place for about a year and new lenses cannot be fitted immediately.
Hydrops is a possible complication of KC. This is where the inner surface of the cornea breaks down, allowing aqueous fluid from the inner eye to flood the cornea. This results in blurred vision. Treatment is simply to wait for it to heal, which can take several months. The condition can be painful and at the acute stage contact lenses cannot be worn.
When you cannot see properly you miss out on the visual cues that sighted people take for granted; facial expression, body language, gestures. Simple activities like crossing a road, making a hot drink or inserting an electrical plug require concentration and take much longer. Trying to keep up with lessons or lectures with visual presentation is exhausting. These experiences often result in a loss of confidence, frustration and irritability. It is easy to feel excluded and to turn in on oneself. Some people with KC get depressed with the constant daily struggle.
KC is not a visible condition, so there are no cues for others to pick up on. It is important to remember that when someone with KC is wearing glasses, they may not be getting 'good' vision. Equally they may have had to remove their contact lenses and without them may be partially sighted. So a student who can cope well in lessons/lectures in the morning, may be struggling come the afternoon. Allergies, poor contact lens tolerance and corneal abrasions may also affect the pattern of contact lens use.
By the evening, the time for private study, eyes may be sore and strained, making it hard to keep up with assignments.
It is important to consult the individual student with KC to establish their precise needs at different times of day and in different situations and to make all the teaching staff aware of these. With school students it would be helpful to involve their parents.
It is very hard to have to ask for what you need in every lesson/lecture. To establish good practice as a routine is very helpful.
Suggestions for support, which will vary with the individual:
Use black markers on whiteboards, rather than red or green.
Provide a clean place with running water and sink plug for inserting/cleaning contact lenses. Student communal facilities may not be adequate.
Students with KC want to do well in their studies. With support and understanding from their schools and colleges, particularly when they are going through a difficult time, there is no reason why they cannot succeed. There is plenty of evidence on our website of students achieving good academic results and of people with KC holding down responsible jobs. A little understanding and consideration go a long way to making this possible. Students with KC are not looking for constant sympathy. What they do need is practical support to allow them to access the curriculum like anyone else and to fulfil their learning potential.
Thank you taking the time to read this and for your support.
| Further information can be found at:- www.keratoconus-group.org.uk
or by writing to:-
Tel. 020-8993 4759
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and Support Association
Page last updated: 19 February, 2015