The 'dark art' of diagnosing CVI.
In a recent interview, UK ophthalmologist and CVI Project leader Dr Cathy Williams joked:
...and a very senior orthoptist teased me about, what she called the 'Dark Art' of diagnosing CVI.
Diagnosing CVI can be a tricky business for doctors. Sometimes they may see a child with a known history that is connected with CVI, for example premature birth. Sometimes there may be brain lesions identified from an MRI, in an area known to be responsible for visual processing. In these cases, where the child also has issues with their visual processing, diagnosis can be relatively straightforward.
But...many children present only with visual difficulties thought to be related to visual processing issues. These may be due to CVI. Or may be partly due to CVI, and partly due to something else. Or they may not relate to CVI at all. Or they may not even be related to vision. That is where identifying what the cause is gets tricky.
And just to make it even trickier, most children with CVI are affected by more than one CVI.
We have explained many times the importance of understanding the cause of the difficulties, and that cause is the CVI or combination of CVIs. With this understanding, support can be targeted and optimised. We know, from many people close to our team, that when support is targeted, lives are transformed. Transformed from a person being at the mercy of their vision and world, to a person taking control of their vision, and flourishing.
We have tried to explain this through five new pages, but rather than use the term dark art, we've used the idea of the CVI Puzzle, which is made up of five rings:
We have written these pages to explain the CVI Puzzle, because we need the platform to explain something more complicated... where a person is affected by multiple CVIs all affecting their visual processing in combination. We've called these CVI Clusters. Most children are affected by a CVI Cluster, not just one CVI. The CVI Clusters are complex to explain and understand because, when CVIs are combined, they can create a whole different type of visual impairment. This will be the subject of our next newsletter, but we wanted to be clear about each of the levels in the CVI Puzzle first.
Different Views of CVI
If you listen to Professor John Ravenscroft's Conversations About CVI (link at end of page), it is clear that everyone understands CVI differently, and explains it differently. We regularly have this discussion within our team, which includes educators, parents, doctors and people with CVI. There is no right or wrong view, just different views from different perspectives and experiences, so all are relevant and useful.
CVI is a medical condition, or more correctly the umbrella term for many medical conditions. These are the brain based impairments of vision, that make up the 4th ring of our CVI Puzzle. The difficulties they cause, we have called CVI Related Behaviours, making up the 5th ring of our CVI Puzzle. Sometimes, and understandably, these two outer rings get mixed up or merged. The rings can be thought of representing a chain of causes and effects. For optimal targeted support, there needs to be an identified 'audit-trail' linking the support being given, to the behaviours, and to the CVIs.
We have tried to explain this by breaking the CVI Puzzle down into these clearly defined individual rings, because understanding the causes is critical to the creation and delivery of matching support.
Targeted support changes lives. For the better.
The CVI Scotland Team
PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page.
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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.