The Sturge-Weber specialist

October 2, 2007

Kudos to this dedicated physician:

Dr. Anne Comi watches a technician pasting dozens of wires to the boy’s scalp. She’s betting on those electrodes to tell her if the damage has spread to the boy’s tender brain – and whether she might be able to prevent the terrible damage it can do.

At 40, Comi is one of the world’s few experts on Sturge-Weber syndrome, an obscure neurological disorder that affects roughly one of every 20,000 children.

She’s among a handful of doctors who devote their lives to fighting and treating “orphan diseases,” conditions that afflict so few victims that drug companies have no financial incentive to study them.