A new children’s book spreads awareness of disease that disproportionately affects New Mexicans
There’s a new children’s book to help kids understand a genetic disease that disproportionately affects New Mexicans. “Bizcochito” tells the story of a grandmother with Cerebral Cavernomas baking the state cookie with her grandson.
“Today's quite special, and Mateo can't wait. For a time with his Nana is always so great,” Esperanza Martinez reads from the book. “‘What are we making?’ said Mateo with cheer. ‘We're making some bizcochitos, Mateo my dear.’”
Martinez was diagnosed with Cerebral Cavernomas, or CCM, in 2022, which is a genetic malformation that causes a variety of neurological symptoms. Martinez now helps a University of New Mexico team get the word out about CCM and the book.
“It tells a very great story and it's more than CCM. It talks about safety and protecting your children's heads,” she said.
Dr. Aditi Kantipuly is a physician and visiting scholar at UNM. She co-wrote the book with help from community members who have CCM or have relatives with it. She said the disease is found disproportionately in New Mexico.
“Our working hypothesis is that this condition has been brought down by Cristobal Baca in the 16th Century, who came from Spain and migrated to New Mexico and passed this mutation onto his descendants,” Kantipuly said.
She said the UNM Department of Neurology is not only working on getting these books out to families and schools in New Mexico. It’s also using funding from Senator Ben Ray Lujan’s office to create a statewide registry to support research as well as educating primary care providers on the disease and how to test for it.
“This illness can masquerade as something a little bit more benign,” Kantipuly said.
And it sometimes goes untreated for long periods of time. She’s hoping the book and other work they’re doing can change that.
This coverage is made possible by the W.K. Kellogg Foundation and KUNM listeners.