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Senators draw attention to mysterious illness

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By Carol A. Clark

The Senate unanimously passed legislation introduced by Sen. Tom Udall, D-N.M., to take a first step toward boosting research and education efforts related to Cerebral Cavernous Malformation (CCM).

CCM is a relatively unknown illness more prevalent among New Mexico Hispanics than any other group.

“I have not personally heard of the disease,” said Nurse Manager Megan Pfeffer of the Los Alamos County Health Department. She checked her registry of reportable diseases during an interview Tuesday and said since CCM was not listed, she would have no way of knowing if anyone in Los Alamos has been diagnosed with the disease.

Pfeffer suggested contacting the University of New Mexico’s pediatric department.

Administrative Assistant Debbie Roybal from UNM’s pediatric neurology department said a few cases have been diagnosed in Santa Fe and Taos and perhaps as many as 100 in Bernalillo, but none in Los Alamos County.

Dr. Leslie Morrison, a pediatric neurologist and an assistant professor at the University of New Mexico Medical School, emphasized the steep human cost of the disease as part of Udall's news release.

“Imagine walking around with hundreds of these lesions in your brain, never knowing just when a hemorrhage or seizure will occur, and feeling like a time bomb is ticking in your head,” Morrison said. “Now imagine knowing that about your child. That is why it is so imperative to accelerate the tempo of scientific research, education and clinical care on this disease.”

Udall’s resolution expresses the Senate’s recognition of the critical need to increase research, awareness and education about CCM.

“CCM is deadly in part because it is so little understood by both the public and the medical community,” Udall said in a release. “By passing this resolution with overwhelming support, the Senate has taken an important first step toward giving this disease the attention it deserves and saving countless lives in New Mexico and across the country.”

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 United States, and thousands of New Mexico Hispanics may be affected.

Because the disease has attracted little scientific or medical attention, however, the precise number of people affected is unknown.

The disease has also struck a number of prominent athletes, including Olympic track and field superstar Florence Griffith-Joyner and Tour de France champion Alberto Contador.

Sen. Jeff Bingaman, D-N.M., joined Udall in introducing the resolution. Bingaman agreed adding that the resolution shines a spotlight on a devastating illness – one that has already affected the lives of too many New Mexicans.

“It’s my hope that the passage of this resolution brings attention to this serious condition, and spurs additional research that could save lives,” Bingaman said.

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.

Udall’s resolution also advocates for the creation of a Center of Excellence to advance research and provide cutting edge treatments for individuals with CCM. This Center also would advance CCM science, health care, and medical education in the Southwest, while providing medical jobs for New Mexicans who want to serve their fellow citizens.

Udall’s proposal also would promote the 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 passed by the Senate.

Joyce Gonzales lost her mother and a nine-year-old cousin to CCM, She is New Mexico’s Angioma Alliance coordinator and applauded Udall’s work on the issue.

“Cerebral Cavernous Malformations has had a huge impact on the state of New Mexico,” she said in the release. “The people I work with who have been affected by this illness usually feel lost and alone since there is so little awareness and so few treatments available to them…. Senator Udall’s resolution is an important step in finding better treatments, increasing education, and someday maybe finding a cure for this devastating illness.”

Connie Lee, president of Angioma Alliance, also highlighted the importance of Udall’s resolution.

“Senator Udall’s resolution is an important first step in raising awareness of this common, but little known, illness,” Lee said. “CCM has disabled thousands of people throughout the United States, including many children. It continues to place many more at risk. Early diagnosis can reduce the effects of the disease, potentially saving thousands from the brain hemorrhages and resulting neurological deficits that mark this illness.”

Udall described the mystery of CCM and its devastating impact on New Mexico’s Hispanic community as unacceptable.

“The resolution that passed today (Thursday) is an important step towards learning more about this disease and building awareness in the medical community that it exists,” Udall said. “I will continue fighting to protect my constituents and all those who currently or may potentially suffer from this little-known killer.”

Senators John McCain, R-AZ, Carl Levin, R-MI, John Kerry, D-MA and David Vitter, D-LA cosponsored Udall’s resolution.

Contact Carol A. Clark at lanews@lamonitor.com or (505) 662-4185 ext. 25. Read her blog at

www.newsextras.wordpress.com.