Highest Rates Are In New Mexico
Three years ago, Joyce Gonzales’ 9-year old cousin came home sick from school with a bad headache and nausea.
Things took a turn for the worse later that night, when the little girl suddenly suffered a seizure. She was taken to the hospital, where she eventually slipped into a coma from which she never woke up. It was determined that the child had died from bleeding caused by a cavernous angioma in her brain stem.
The condition, which the little girl and her family didn’t know she had, happens to be more common in New Mexico among Hispanics than anywhere else in the world. Gonzales herself had been diagnosed with cavernous angiomas just a year before.
This week, the city of Santa Fe and the Cavernous Angioma Alliance is sponsoring a slate of events to help increase the condition’s relatively low profile.
“It’s bringing awareness to people so they recognize the illness is in New Mexico and how highly concentrated it is,” said Gonzales, a Santa Fe resident.
Cavernous angiomas are raspberry-shaped clusters of blood vessels found mostly in the brain and spinal cord. The bubble-like structures lack certain layers found in the walls of normal blood vessels, a feature that can cause blood to leak, wreaking all sorts of havoc.
One in every 100 to 200 people are suspected of having the condition, according to the CAA. Symptoms — seen in about 30 percent of those with the cavernous angiomas — include seizures, neurologi- cal problems, headaches and hemorrhages. Severity ranges widely, and treatment includes surgery and careful monitoring.
Many sufferers, like Gonzales, bounce from doctor to doctor before being accurately diagnosed.
While cavernous angioma isn’t new, reliable identification of the condition didn’t begin until the 1980s, when sophisticated diagnostic equipment, including magnetic resonance imaging, became readily available. Previously, those with the disease were often thought to have multiple sclerosis or a seizure disorder, among other things, according to the CAA.
“I would say the majority of people who have the disease are misdiagnosed or undiagnosed,” Gonzales said.
Current estimates put the number of New Mexicans living with cavernous angiomas between 30,000 and 45,000, according to Connie Lee, the Virginia-based president of the CAA.
“They have been able to determine that we here in New Mexico have the highest concentration of this in the world and most of that is in northern New Mexico,” Gonzales said.
The condition is a public health concern for New Mexico, Lee said, and the state has an obligation to lead the way in promoting awareness and research.
G onza les and ot hers believe that New Mexico’s sufferers, who tend to have a hereditary form of the disease that causes multiple angiomas, are linked by a common ancestor who may have come to New Mexico from Spain at the turn of the 16th century.
Accordingly, those most at risk are Hispanics with roots in the state that date back at least 200 or 300 years, though recent Mexican immigrants, mainly from Chihuahua, have also been diagnosed with the same type of cavernous angioma.
Doctors have found the condition to be especially prevalent among Hispanics with certain surnames, Gonzales said, though she declined to identify those names, saying she didn’t want to unnecessarily upset people.
“Anyone who has this long history may have the illness, but obviously not everyone does,” she said.
The condition is carried on a dominant gene, and sufferers have a 50 percent chance of passing it on to their children.
Oftentimes, multiple members of the same family are diagnosed with cavernous angiomas following the positive test of one member, Gonzales said. People may then begin to make connections between the disease and the strokes, seizures, aneurisms and other health problems exhibited by past generations of their family.
Events sponsored by the city and the CAA this week include a book signing by cavernous angioma survivor Les Duncan, author of “Brainstorms.”
There will be a presentation by University of New Mexico pediatric neurologist Dr. Leslie Morrison and a press conference recognizing, among others, Democratic Congressman Tom Udall, Santa Fe-area state Rep. Jim Trujillo and former Santa Fe City Councilor Karen Heldmeyer — who originally suggested city-sponsored Cavernous Angioma Awareness Week events — for their work in passing legislation promoting awareness of the condition.
That legislation, from Udall in particular, appears to be making a small difference, Lee said.
“We’ve noticed there’s been research and more money floating into research since the legislation was introduced,” she said.
For more information, visit www.angiomaalliance.org or call the CAA at 1-866-432-522.
Angioma Awareness
The city of Santa Fe and the Cavernous Angioma Alliance are hosting the following Cavernous Angioma Awareness Week events this week:
Today — Book signing by Les Duncan from 2 to 5 p.m. at Borders on Montezuma. Duncan, who has survived five hemorrhages, wrote about his experiences with cavernous angioma in the book “Brainstorms.”
Thursday — A presentation and question & answer session led by University of New Mexico pediatric neurologist Dr. Leslie Morrison. The meeting will be held at 6:30 p.m. in the Southwest Conference Room at Christus St. Vincent Regional Medical Center
Friday — News conference to recognize individuals who have worked to generate money for research and education on cavernous angioma. Special awards will be given to Democratic Rep. Tom Udall, state Rep. Jim Trujillo and former City Councilor Karen Heldmeyer. The event will be at 4 p.m. in the city of Santa Fe Council Chambers.
