study. Dr. Lilyana Amezcua believes the survey
“might have led to less attention being paid to this
population in terms of potential MS diagnosis.”
Dr. Amezcua, an assistant professor of clinical
neurology at the University of Southern California’s
(USC) MS Comprehensive Care Center in Los
Angeles, says she hears a lot of “Why me?” from
people. “They mean, ‘Why me when all the data
about prevalence isn’t about me?’ ”
But recent studies conducted by Dr. Amezcua
and others are showing an increase in the number
of people throughout Latin America who have
MS—a figure that is rising faster than the growth
rate of the region’s total population.
Can ancestry define the disease?
A small pilot study published in Ethnicity
& Disease in 2010 found racial and ethnic
differences in MS disease characteristics and
treatments between Hispanics/Latinos, African-Americans and non-Hispanic Caucasians. For
example, a larger proportion of Latinos reported
normal function for mobility and for bladder and
bowel function. According to a separate survey of
99 Hispanics/Latinos who were enrolled in the
North American Research Committee on MS
(NARCOMS) patient registry, more Hispanic
people reported experiencing fatigue, cognitive
symptoms, mental health problems and pain than
did non-Hispanic people with MS.
Dr. Amezcua is delving further into differences
within the Hispanic/Latino population itself.
“For instance,” she says, “we’re looking at disease
characteristics in relation to ancestral gene
markers,” she says. “Some Hispanics have up to
90 percent European or Caucasian ancestry.”
So far her team has found that individuals with less
European ancestry seem to be at increased risk of
disability. “This could suggest that the variation in
disease characteristics, including treatment response,
may be linked to an individual’s background. This is
critically important in order to understand treatment
failures and differences in disease progression.”
Culturally competent care
Latinos/Hispanics face a number of potential
roadblocks to quality care. These may include
language barriers for Spanish speakers,
cultural differences that can lead to serious
misunderstandings and, for undocumented
immigrants, a fear of being deported if they seek
medical help, as well as reduced access to programs
that provide low-cost MRIs or drugs.
“This is an underinsured population even if
they are documented,” says Moyra Rondon, the
Society’s senior director of Counseling Programs
and Hispanic Outreach for the New York City-Southern New York area. In fact, Latinos/
Hispanics have the highest uninsured rates of any
racial or ethnic group within the United States,
A fAMIly ouTIng
The Society hosts an annual Day for Hispanic families living with MS in the new york City area. In 2011, the 147 attendees could choose from a variety of bilingual activities: presentations on
finding the family’s Strength and on MS pain and its treatment; performances by a latino comedian
and band; and a lunch of traditional latino food. Kids could participate in interactive learning about
MS symptoms plus face painting, arts and crafts and a Zumba dance class. People also were able to
pick up bilingual literature about MS, and link to crisis services and support groups. Call the Society
at 1-800-344-4867 to learn about programs in your area.
