UNM Health Sciences Center researchers and U.S. Sen. Tom Udall D-N.M., are hosting a daylong meeting Saturday to update families living with Cerebral Cavernous Malformation (CCM) on new efforts to boost research into the condition. CCM is a genetically transmitted disease that affects Hispanics – especially those with roots in New Mexico.
Cerebral cavernous malformations are brain vascular malformations created when the signaling for capillary development in the brain is improper. The resulting, thin-walled vessels are susceptible to slow leakage or larger hemorrhage into brain tissue, according to Leslie Morrison, MD, professor of neurology and pediatrics and Vice chancellor for academic affairs at the UNM Health Sciences Center. Consequences of CCM can range from headaches to seizures, intracranial hemorrhaging and premature death.
Transmission of the gene has been linked back to a Hispanic family who settled in what is now New Mexico in the 1580s.
“These were some of the earliest Hispanic New Mexican settlers and the gene has passed on through up to 17 or 18 generations of very large families who traditionally lived in this area,” said Morrison. “We estimate that only 50 percent of those who have CMM are aware they have it,” said Morrison.
Only one parent needs to carry the gene for it to be passed on to children and there is a 50/50 chance they, in turn, will carry it. Some 25 percent of those with the condition never experience health issues, but the majority eventually will have medical complications related to bleeding in the brain, said Morrison.
Sen. Udall introduced legislation this week to expand research at UNM for CCM. The university is already working with some 250 patients and their families, said Morrison.
“The sad reality is that this disease is difficult to diagnose and today we have no cure. We need more research and a facility dedicated to giving patients the best care possible,” Udall said. “With a high population of patients with Cavernous Angioma and an excellent care facility at UNM, New Mexico is the clear choice for a care center like this.”
Contact: Cindy Foster, 272-3322