Udall Seeks to Raise Awareness of Mysterious Illness Common Among New Mexico Hispanics

Congressman Says Cerebral Cavernous Malformation Needs More Attention, Research

WASHINGTON — U.S. Representative Tom Udall, D-N.M., is asking Congress to take a first step towards boosting research and education efforts related to Cerebral Cavernous Malformation (CCM), a relatively unknown illness more prevalent among New Mexico Hispanics than any other group. Udall's legislation, introduced in the House yesterday, would commit the House of Representatives to recognize the critical need to increase research, awareness and education about CCM.

"When it comes to an illness like CCM, knowledge saves lives," said Udall. "Alarmingly, CCM is often misunderstood and misdiagnosed. I am pushing for more CCM research and awareness so that thousands of New Mexico Hispanics become armed with knowledge they need to recognize the illness and receive the proper treatment."

CCMs are caused by abnormal blood vessels that form clusters, known as angiomas, in the brain or spinal cord. If the angiomas bleed or press up against structures in the central nervous system, they can cause seizures, neurological deficits, headaches, or hemorrhages.

The disease was common among Spanish settlers in New Mexico in the 1580s. Since then, it has been passed down through generations. New Mexico has the highest population density of the illness in the world, and tens of thousands of New Mexico Hispanics may be affected. Because the disease has attracted little scientific or medical attention, however, the precise number of occurrences is unavailable.

Udall also says the creation of a Center of Excellence would provide the highest quality medical and surgical care for individuals with CCM. He is also advocating for an expansion of the existing DNA/Tissue and Clinical Database, originally developed by Angioma Alliance. The current database is underfunded, which means that it cannot accept all the samples that are offered.

Udall has worked with members of New Mexico's medical community and CCM victims to craft the resolution he introduced in the House.

Joyce Gonzales — who lost her mother and a nine-year-old cousin to CCM -- now serves as New Mexico's Angioma Alliance Coordinator. She applauded Udall's work on the issue.

"I am incredibly grateful for the support Congressman Udall has given to those affected with CCM," said Gonzales. "I was misdiagnosed for 15 years before my doctor informed me I needed emergency spinal cord surgery. My mother and cousin were not so lucky. Because this disease is so little understood, they were not diagnosed in time to save their lives. The Congressman's support and concern will help bring about awareness, education and research for this illness that affects thousands of New Mexicans as well as other Americans throughout the country."

Connie Lee, President of Angioma Alliance, also highlighted the importance of Udall's resolution.

"For us," said Lee, "this resolution represents a huge step forward in raising awareness of this illness. This is truly a national illness, and it needs the kind of attention that the U.S. House can provide." Lee also noted that CCM is a “paradigm illness,” meaning that research on CCM may help doctors understand other diseases, including other vascular illnesses and, potentially, cancers.

Dr. Leslie Morrison, a pediatric neurologist and an assistant professor at the University of New Mexico Medical School, emphasized the key role that New Mexicans have played in addressing CCM.

Said Morrison, "This resolution represents true recognition of the impact of Cerebral Cavernous Malformations in the state of New Mexico, where it affects so many families, and the even greater role the Angioma Alliance fills in promoting awareness and research on the national and international front. New Mexicans in the community and at the University of New Mexico will make contributions toward improved understanding and treatment of this potentially devastating disease."

"I am proud to represent the special state of New Mexico, which is so culturally unique and diverse. As I've learned, the Hispanic population in our state is also more likely to face the distinct medical challenge of CCM, but that fact is largely unknown. Passing my resolution would help to raise awareness about this disease and galvanize the medical community to give it the attention it deserves," concluded Udall.