LOS LUNAS — Capt. Cristóbal Baca and his wife, Doña Ana Maria Pacheco Ortiz, brought more to New Mexico than their children and reinforcements for Oñate’s colony. Little did they know, they carried a rare genetic mutation that would impact generations to come.
The Los Lunas Museum of Heritage and Arts will host a conference at the Los Lunas Transportation Center with critical information presented by Nora Chavez, a community engagement specialist with the Angioma Alliance, who is working on the Baca Historical Project.
The event will also provide presentations by genealogists, historians, family and clinical presentations, plus free DNA testing for direct descendants of Cristóbal Baca and his wife. The event runs from 10:30 a.m. to 4 p.m. on Saturday, May 19.
Known as New Mexico’s medical mystery, the genetic mutation has been traced to the Baca family as far back as the early 1600s and as far north as Taos.
The gene is dominant, so it doesn’t skip a generation and it causes the rare cerebral cavernous angioma, CCM-1 — a weakened brain or spinal column capillaries which can hemorrhage and cause devastating effects, including stroke, seizure, paralysis and death.
“It affects a majority of native New Mexico Hispanics — we’re talking about people whose families have been here for generations,” Chavez said. “The disease has been passed on down each generation for 417 years.”
The good news is that 60 percent of the population with CCM-1 never have any problem whatsoever and the other 40 percent can be treated, Chavez said.
There are many kinds of medications now and the University of New Mexico Hospital specializes in CCM-1 treatment.
Even though it has been around for 400 years, most people and doctors have never heard of it and it is often misdiagnosed or goes undiagnosed, even today in these modern times, Chavez said.
It is considered a rare illness because less than 2 percent of the population in the United States has it, but in New Mexico, it is not a rare illness at all.
“We have more people with this genetic mutation here, more than anywhere in the world,” she said.
The weakened capillaries of CCM-1 in the brain or spinal cord can bubble with blood flow and form tiny raspberry-like protuberances where the capillaries are weakest and blood flow has accumulated. Generally no bigger than a pinhead, if they get too big, they start bleeding and cause health issues, Chavez said.
Symptoms include migraines, seizures, mini strokes, blurred vision, the blank stare of focal seizures and other symptoms depending on where the pressure is building on the brain or spinal cord.
“What makes it so hard to diagnose is because it mimics many other illnesses,” Chavez said. “Depending on where the angioma is located in the brain, those are the symptoms you get.”
Memory, vision, vocalization, behavior and motor skills can all be affected depending on the angioma’s location in the brain and numbness, temporary paralysis and other symptoms can be angiomas located on the spinal column.
If both parents have CCM-1, there is a 75 percent chance their children will have it, and if only one parents has it, there is a 50-50 chance their offspring will have it.
Cristóbal and Ana Maria Baca had three sons, including Antonio and younger brother, Alonso, who were born in New Mexico, plus three grown daughters. The ancestral line from their family is woven through many families of Valencia County. Knowledge of CCM-1 can save lives, especially children.
“If you’re a parent or grandparent, it’s best to know so you have the best information to make the best medical decisions for you and your children,” Chavez said.
Baca Family Project conference participants are encouraged to bring their family albums and can register online at bacafamily.org through the “events” link, or call Nora Chavez at 450-5902, or Troy Ainsworth at the Los Lunas Museum of Heritage and Arts at 352-7720.