After years of baffling doctors with burning pains in her arms, Santa Fe resident Joyce Gonzales finally found out what was wrong with her — she had a rare disease called cavernous angioma, which is a genetic mutation of blood vessels in the brain and spine.

Although surgery helped save Gonzales' life, the disease was not caught in time to save the life of her cousin, the late Jenae Gallegos, who died in 2005 from the disease at age 9.

Gonzales hopes that other families who are dealing with cavernous angioma or who might potentially have to, will attend a free meeting today from 8:30 a.m. to 12:30 p.m., at the Hilton Santa Fe. The meeting is scheduled for after the conclusion of International Cavernous Angioma Scientific Meeting so that any new information or discoveries brought could be passed along to patients and their families.

"Having this meeting in Santa Fe represents how important New Mexico is to understanding this illness. The scientists hope that the work they do in Santa Fe will translate to cures for those affected here and around the world," said a news release from Connie Lee, president of Angioma Alliance. The national organization for those affected by cavernous angiomas is sponsoring the meeting, which will be attended by scientists from all over the world. The Angioma Alliance said that when scientists work together, research will advance more quickly.

Gonzales, the group's state coordinator, said that New Mexico has a high number of people who suffer from cavernous angioma, which could cause hemorrhages in the brain and spinal cord that could lead to paralysis or death. This is because, Gonzales said, a genetic mutation that occurred among some of the early Spanish settlers of the area.

"It's a mutation that we know has been in New Mexico for a long time," Gonzales explained. "We also know that it's a dominant gene, so if the parent has the illness, each of their children will have a 50 percent chance of inheriting the gene."

Gonzales' children have had genetic testing and doctors have determined they do not have the disease, nor are they carriers. She estimates that there are between 10,000 and 30,000 people who have the disease in New Mexico, but that a majority of them are still undiagnosed. She hopes people will attend the meeting if they have or suspect they have cavernous angioma, symptoms of which include seizures, headaches and hemorrhages.

"I'm hoping that another family doesn't have to go through what (Jenae's family) did," Gonzales said. "It was very traumatic."

For more information, visit www.angiomaalliance.org.

Contact Ana Maria Trujillo at 986-3084 or atrujillo@sfnewmexican.com.