Treating multiple sclerosis, as far as Dr. Alicia M. Conill is concerned, is about much more than just taking medication.
“Illness is not simply a biological
process,” she says. “How you view
things socially, culturally and
societally plays a role in how you deal
with the disease.”
Dr. Conill, a retired primary care
physician and member of the
National MS Society’s Hispanic/
Latino Advisory Council, was
diagnosed with MS in 1987 when
she was 30. Born in Havana, Cuba,
she is quick to point out that there
is no single Hispanic/Latino culture.
“We come from many different areas
of the world,” she emphasizes. “But
a basic sense of family, tradition and
loyalty threads through our different
branches.”
Ana Franco and her daughter Julia Laureano, who was diagnosed with MS at age 12 and is legally blind, take a stroll with Julia’s guide dog, Dogo.
Indeed, “The terms ‘Hispanic’ and
‘Latino’ are social constructs, with
little biological basis,” says clinical
psychologist Ron Durán, PhD,
who is an associate dean at Alliant
International University, and also a
member of the Society’s Hispanic/Latino Advisory
Council. “We’re black, Caribbean, mestizo, Native,
white. What it comes down to is self-identity and
key shared values.” Those shared values deeply
affect the experience of living with the disease.
DAVID GODLIS
Not a ’Viking disease’
For a long time, healthcare professionals assumed
that MS was uncommon in the Hispanic/
Latino population. When Jessica De La Peña was
diagnosed at age 27, “One doctor actually asked
me, ‘Why do you have a Viking disease?’ ”
“In our community, you don’t hear the words
‘multiple sclerosis,’ ” De La Peña, a teacher
in Porterville, Calif., who is now 41, says. “I
sometimes think my grandmother has it, based on
her symptoms. It makes me wonder how many
other Hispanic people are out there who might
not know why they have their symptoms.”
A 1978 survey in Neurology that examined
MS-related deaths in California found that people
with Spanish-sounding last names had lower
MS mortality compared with the others in the
