Ask the Experts: Eye Problems in Children

Question: Do you have any statistics on how many young people (up to 18) may experience significant problems with vision? -- Gillian C., Australia

Answer: As for statistics on young people, there is difficulty in collecting such data because we do not have the denominator for these numbers. We have some counts, but we have no idea what percentage that might be because we don’t know how many people with VHL there are in total.

From our own studies here among more than 400 patients with VHL, the number of young people who are severely affected is low. In fact, the average visual acuity of all our cases is 20/25 in one eye. About 11% of our patients have optic nerve lesions, 1% have them in both eyes. Approximately 8% have enucleation or loss of one eye.

We see all patients as part of the screening protocol, not just when they have severe eye problems, so we probably have a better perspective on the general situation than most eye doctors. While children may develop eye problems at early ages (2 or 3), if they are treated appropriately they don’t usually get into trouble until sometime in their 20’s. We are always hoping to reduce the severity of eye disease in VHL. We have started a trial with an anti-angiogenic agent.

-- Emily Chew, M.D., National Eye Institute, National Institutes of Health, Bethesda, Maryland