Alburquerque, N.M. A mother whose daughter is living with hydrocephalus, a poorly understood neurological disorder, is fighting to raise awareness of the condition that affects one million Americans.

Hydrocephalus is caused by a buildup of fluid in the brain. Standard treatment is the surgical insertion of a shunt, which channels the fluid to other parts of the body. But shunts can malfunction and cause infections, so it is not unusual for patients to undergo numerous surgeries and extended hospitalizations.

Kathy Carrillo of Albuquerque, whose 4-year-old daughter Amy was born with the condition, believes that New Mexicans with hydrocephalus are underserved when it comes to treatment, information and support.

“Ninety percent of the people I talk with have never heard of hydrocephalus,” says Carrillo, who is also mom to Charles, 14, Selena, 12 and William, 9. “Pregnant women are advised to terminate and families of the newly diagnosed are told that their prognosis is grim. We have a lack of certified pediatric neurosurgeons in the state of New Mexico,” she says.

In children hydrocephalus is associated with learning delays and social difficulties. A 2004 study found that more than one-third of children have an IQ of less than 70. Motor difficulties are present in 60 percent of cases and visual or auditory problems in 25 percent. But hydrocephalus does not receive the same classroom recognition as conditions like Asperger’s and ADHD.

Carrillo, together with speech and language pathologist Margaret Wood whose daughter Abby also has hydrocephalus, started a support group last year. The group, Hydrocephalus United Group Support, or HUGS, meets at coffeehouses or Carrillo’s house to share experiences and pool their wisdom.

Carrillo also tries to meet with the newly diagnosed and offer them information and encouragement.