For low vision specialists and those who consult them
We shouldn’t overlook conditions outside the ‘big three’ causes of low vision
June 29, 2009Posted by on
I had an interesting message from Heather Kirkwood in response to my blog post on albinism last week regarding Hermansky-Pudlak syndrome, a condition where albinism is associated with bleeding disorders and pulmonary disease. Whilst this condition is rare (apart from in Puerto Rico) Heather emphasised “just because it is rare doesn’t mean it shouldn’t be overlooked.”
This led me to think that nearly all visual impairment research has studied the effects of the “big three” conditions: Macular disease; Glaucoma and Retinitis Pigmentosa. This doesn’t help those with conditions which affect vision in different ways: even relatively common conditions like diabetic retinopathy, albinism, and corneal dystrophy are rarely studied in low vision research labs.
I am as guilty of this as any of my colleagues: all of my published research to date has been on macular disease. It is clearly important to improve our understanding of a condition which causes severe visual impairment in 1 in 11 people over the age of 75, but it is no less important to further our knowledge of diseases which affect 1 in 1000, or 1 in 1000000 people.
With a finite pool of people working in low vision rehabilitation, and a limited pot of research money for all of us, I think it is inevitable that the most common conditions will be studied more than other causes of low vision. However when I next come to plan a project and apply for research funding I will bear Heather’s comments in mind before writing another grant starting “Age-related macular disease is the leading cause of legal blindness in Europe and North America”. I urge my colleagues to do the same.