New Mexican lawmakers say more has to be done to investigate and determine why a rare brain and spinal disorder disproportionately affects, and has for centuries, Hispanics residing in their state.
Over 1.5 million people all over the country are afflicted by the potentially deadly condition, called Cerebral Cavernous Malformation, but the disease is oddly concentrated in this specific demographic.
The malformation occurs when abnormal blood vessels form angiomas, or clusters, in the brain or spinal cord. If the angiomas bleed or experience pressure from pushing against structures in the central nervous system, the consequences range from headaches to seizures, neurological deficits or hemorrhages.
According to Senator Tom Udall (D – NM), the Spanish immigrants that settled the New Mexico area in the 1580s carried the disease, and it has since been passed down from generation to generation. As a result, the rare disorder primarily plagues New Mexican Hispanics.
Since there has been little research on the rare disease, it cannot be determined exactly how many New Mexico Hispanics are affected by it, but the number is estimated to be in the thousands.
“Very little is known about this genetic disease that disproportionately affects Hispanic New Mexicans, but can result in seizure, stroke and death,” Sen. Udall said, according to a press release on his website.
On June 27, Sen. Udall, along with the New Mexico congressional delegation, introduced the Cavernous Angioma Research and Treatment Act to Congress, with hopes of expanding research and treatment for the disease.
“This bill brings much-needed attention to this rare disease, while also takes 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,” Representative Steve Pearce (R – NM) said in a press release.
The bill would improve the communication channels among medical centers over the state of New Mexico, so that doctors and researchers can share information with ease and educate each other on the little-known disorder. Also, it would help people living in rural communities have better access to necessary health care.
“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,” Senator Martin Heinrich (D – NM) said.
Organizations such as the Angioma Alliance Scientific Advisory Board and CCM3 Action, as well as the University of New Mexico, support the bill.