I've been privileged to give many talks about cerebral visual impairment to a wide range of audiences. On a number of occasions, a member of the audience has approached me afterwards to say they have just realised that they must have a form of CVI themselves. They'd had their difficulties for years but had not realised why, until they heard their symptoms described in the lecture.
Why is this?
The answer is that they did not know that they did not know about their visual condition, so could not tell anyone about it. They had never known that such an explanation for their difficulties existed.
If one does not know that one does not know, this is called an anosognosia. This is an important concept in the field of CVI.
So how can CVI be an anosognostic condition?
There are a number of good reasons.
A symptom is defined as...
a physical or mental feature which is regarded as indicating a condition of disease, particularly such a feature that is apparent to the patient.
The final phrase '...that is apparent to the patient', is key.
In other words, despite CVI being disabling, those affected often do not know that they have the problem, because the condition is anosognostic and therefore is not symptomatic. This means they can't go to the doctor to say what the matter is, because they can't know.
Here the plot thickens!
As CVI is often asymptomatic, doctors rarely see affected individuals.
So not only are people with CVI commonly anosognostic for their condition, but so is society as a whole.
That's why websites like CVI Scotland, that aim to inform everyone about CVI are important. Once people with CVI, or those who look after them, have learned that their difficulties are due to CVI, they cannot unlearn it, so they no longer have anosognosia, and this can be the first step on the pathway to habilitation or rehabilitation.
Your generous donations will be put to immediate use in supporting our charity...
At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.