A rare brain and spinal disorder that strikes New Mexico Hispanics, and
which appeared in a patient in El Paso, would get new attention and funding
under a bill introduced by New Mexico's Congressional delegation.
U.S. Sen. Tom Udall said the disease was common among Spanish settlers in New Mexico in the 1580s and has been passed down through generations. New Mexico has the highest population density for the illness in the United States, and thousands of New Mexico Hispanics may be affected.
Cerebral cavernous malformation (CCM), also known as cavernous angioma, affects more than 1.5 million Americans, the largest proportion of whom live in New Mexico.
"Very little is known about this genetic disease that disproportionately affects Hispanic New Mexicans, but can result in seizure, stroke and death," said Udall, who recently introduced the Cavernous Angioma Research and Treatment Act. "By boosting collaboration, research and awareness, we can prevent the dangerous brain bleeds caused by CCM."
The disease is caused by abnormal blood vessels that form clusters, known as angiomas, in the brain or spinal cord. If the angiomas bleed or press against structures in the central nervous system, they can cause seizures, neurological deficits, headaches or hemorrhages.
CCM has been reported in athletes, including Olympic track and field star Florence Griffith-Joyner.
According to a 2011 report published in the El Paso Medical Society's journal, "The El Paso Physician," doctors detected a form of CCM in a man who had reported to a local hospital for emergency treatment. The report, "Cerebral Cavernous Malformation presenting as an Oculomotor Nuclear Syndrome," described the patient as a white man in his 60s.
"We (also) must continue to build upon the efforts of cavernous angioma centers, such as the one at the University of New Mexico," Udall said, "that are doing valuable research and provide important resources for patients, providers and caregivers, and explore ways to incorporate telehealth technology to expand its reach across the state and nation."
U.S. Sen. Martin Heinrich and U.S. Reps. Steve Pearce, Ben Ray Lujan and Michelle Lujan Grisham said they also support the bill.
"Cavernous angioma affects New Mexico Hispanics at a dramatically higher rate than other populations," Heinrich said. "Investing in clinical and research centers across the country to track and treat individuals afflicted by this illness is an important step in developing a cure."
Pearce said, "This bill brings much-needed attention to this rare disease, while also taking vital first steps in finding new treatments and approaches to assist individuals in New Mexico and across the United States living with this debilitating disease."
The University of New Mexico and research and advocacy organizations such as the Angioma Alliance Scientific Advisory Board and CCM3 Action also back the legislative proposal.
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