and uncles are often as important to us as parents,”
he says, describing the importance of extended
family, “and first cousins might be seen as siblings.
When it’s needed, there are a lot of people who
can be supportive. But when family members
don’t understand your symptoms, they think it’s
your will, not your condition. If major caregivers
believe that, it can be really awful.”
Another form of social support gone wrong,
Durán explains, is when caregivers unintentionally
disempower a person by sending invalidating
messages, like “Let me do this for you; you’re a
sick person and you cannot possibly take care
of yourself.” Families need to understand the
variability and unpredictability of symptoms, he
says.
“The fact is, while there are wonderful programs
and a number of therapy choices, this population
doesn’t consistently take advantage of them,”
Dr. Amezcua says. “MS has not been on their or
their families’ radar, so its implications are likely
misunderstood.” Having culturally sensitive,
readily available Spanish or bilingual materials is
essential. (See “En español,” at right.)
“In other conditions, such as diabetes, cancer
and cardiovascular disease, we have learned that
family involvement can be an important element
in treatment success,” she says. “The family studies
we’re doing now in MS could help close gaps in
care.”
The role of ‘respeto’
When he was first diagnosed in 2003, Leopoldo
Perez, now 36, of Los Angeles, felt very lost. “I
didn’t know where to find help,” he recalls. “There
were services to help with job rehabilitation,
school, where to get medical supplies and other
devices that would make my life easier—but none
of this was clearly explained. And being from a
Mexican family, we were taught to never question
authority.”
En ESPAñol
The Society currently offers 14 brochures in Spanish, including information on
the basic facts of MS, disease-modifying
medications, fatigue, depression, cognition
and bladder problems, as well as guides for
children, caregivers, employees and employers.
The Society’s Spanish-language webpage
( mueveteMS.org) includes information and
videos on diagnosis, treatment, symptoms and
more. (Spanish-speakers can call the Society at
1-800-344-4867 and press option 3 to reach a
Spanish-speaking MS navigator.)
Café con Leche is a Society program
offering free monthly professionally led
telephone support groups for anyone affected
by MS who speaks Spanish and wants to
connect with others. To learn more or to
register, call 1-800-344-4867.
Dr. Maria Reyes-Velarde, a physician who
lives with MS, has written a book, Con Los
Pies en la Tierra, and maintains an MS blog at
hablemosdeem.com.
The Society’s quarterly Conexión Latina
offers education and resources in both Spanish
and English. Readers can learn about programs
that assist members of the community to live
their best lives with MS. Call 1-800-344-4867 for
the latest issue.
Dr. Durán says that it’s important to many
Latinos/Hispanics to be polite and pleasant to
authority figures no matter how much stress they
are feeling. What is called “respeto,” or respect,
is a significant value for many Latinos/Hispanics.
“And who is more of an authority than a doctor?”
he asks. Respeto suggests a formal kind of
respect (say “yes, sir,” don’t argue), but it does
not necessarily translate into cooperation with a
service provider or a treatment plan. Hispanics/
Latinos may or may not follow a doctor’s advice,
