The worst is over for Pauline Mifsud, at least for now.
She remembers years of helpless frustration throughout much of
the 1980s, a personal misery her growing children were just too
young to understand.
The youngest, Catherine, now 23, would often miss days of grade
school because her mother lacked energy to do simple
”
mom
”
things in the morning.
The worst is over for Pauline Mifsud, at least for now.
She remembers years of helpless frustration throughout much of the 1980s, a personal misery her growing children were just too young to understand.
The youngest, Catherine, now 23, would often miss days of grade school because her mother lacked energy to do simple “mom” things in the morning.
“I had to go to Sacred Heart once and tell the teachers: ‘If Catherine doesn’t make it to school, it’s not because she doesn’t want to. It’s because I can’t get her ready.’
“I couldn’t get her breakfast and make lunch and that sort of thing,” she says.
Routinely, Mifsud would wake up, get dressed and immediately return to bed for rest. And she wasn’t lazy. Fatigue caused by lupus – a chronic disease of the immune system – was wiping her out.
Mifsud has suffered from lupus since the late 1970s. And although she’s now in remission, the possibility of a “flare-up” will never cease.
Her life revolves around the disease, around being cautious, around knowing each ailment encountered could be the one that triggers a chaotic plunge of her fragile immune system.
Understanding this complex affliction is impossible for anyone who doesn’t actually have it, according to Mifsud and others in Hollister who suffer from the disease.
The often intense internal strife usually doesn’t show on the outside, which is why Mifsud says her four kids – naive at the time – usually didn’t grasp her struggles.
Catherine would come home from Sacred Heart, anxious to share the excitement of the day, yet knowing she couldn’t talk much with her mother.
“I always wanted to share those things at school, but she couldn’t take it all in,” Catherine says.
Lupus – which has no cure – doesn’t just diminish physical capabilities. It hinders mental cognition, too, Pauline says.
Mifsud worked in the early 1990s at several schools in as a speech therapist and special education teacher. She remembers shopping when a student would approach her and Mifsud couldn’t remember the student’s name. “It just didn’t compute,” she says.
Lupus causes an over-activity of the immune system. The body no longer differentiates its own normal cells from viruses, bacteria or infections. The immune system essentially attacks itself.
It leaves almost every system in the body susceptible to damage – especially the skin, joints, blood and kidneys, according to the Lupus Foundation of America. It most commonly results in achy joints, fever, arthritis, extreme fatigue and rashes.
“The fatigue is terrible,” Mifsud says.
Researchers have yet to find a specific genetic link to lupus, although evidence points to the disease running in families. Born and raised in Hollister, Lily Klauer also has lupus. So does her sister, daughter, cousin, niece and uncle – all born and raised in the area, too.
Approximately 1.4 million people in the U.S. have lupus, 90 percent of which are women. Ethnic minorities are also two to three times more likely to suffer from it, according to the LFA.
Several environmental links have been found to trigger the onset of lupus. They include infections, antibiotics, ultraviolet light, stress, drugs and hormones.
Mifsud says her trigger – an over exposure to the sun – occurred in 1978 while on vacation with her family in Sonoma when she fell asleep sunbathing next to a pool.
“When I woke up, I was absolutely purple,” says Mifsud, who has had the chronic disease since.
Lupus afflicts each person differently and is classified into three levels of severity, says Mifsud, who calls her own case mild.
Mifsud says scars from those severe burns have mostly receded. But for many others, the sunburn has often left permanent, severe scarring on a person’s face. At a lupus support group in the 1970s, one woman had such bad scarring, Mifsud says she looked like a leper.
“She had no face. It was completely concave,” Mifsud says.
Mifsud was originally diagnosed in 1978 with “discoid” lupus, the least severe form that mostly affects the skin. In 1984 doctors upped Mifsud to “systemic” lupus, which has the potential to deter almost any organ in the body. The third – “drug-induced” lupus – is caused by certain prescribed drugs that treat heart problems. It almost always goes away after halting use of the medication.
Mifsud, who expresses fortune for what she calls her “mild” case – knows she’s not alone. A staggering number of others in Hollister have it, too.
A local population
Klauer is one of the others. She suffers from a severe case of systemic lupus. And like many others in Hollister, Klauer receives treatment from Dr. Gerlie Papillion, a rheumatologist who has specialized in lupus for 20 years.
“When I actually met Dr. Papillion, I was so sick, she told me I was near death,” Klauer says.
Klauer has since continued her endless bout with lupus. Kidney problems six years ago forced her into chemotherapy. And even now, every two or three months, Klauer goes to the hospital for the most basic ailments.
“If I get a cold, I don’t usually just have a cold,” Klauer says. “I get pneumonia and go to the hospital.”
Klauer – like others in a endless battle with the disease – believes San Benito County has an unusually large prevalence of lupus. No official statistics are kept to track the incidence.
“It’s impossible to estimate the number (afflicted) in Hollister,” Papillion says.
Many with the disease agree the number is higher than most communities of this size. And no one seems to know the reason.
“For a small community, we have a lot of people,” says Klauer, who believes 90 percent of the people in Hollister with lupus were born and raised here. “I’ve always wondered.”
She speculates, based on her own experiences as a child, that pesticides may be one cause.
“I used to pick prunes, cut apricots, pick walnuts,” Klauer says. “I remember when I was young, there used to be airplanes spraying…”
Mifsud also believes the area has a high prevalence but doesn’t have any definitive rationale for it, either.
“I’m thinking diet,” says Mifsud, whose European-immigrated family consumed a large amount of meat. She also mentions pesticides as a possibility.
Dr. Melvin Britton, a leading researcher on lupus for the Palo Alto Medical Foundation, strongly believes a genetic component predisposes patients to lupus. But he hasn’t ruled out that certain environmental factors may trigger the disease, thus causing a higher incidence in a community.
“The CDC (Center for Disease Control) is always looking into these things… the environmental thing has always come up,” says Britton, who adds there is currently “no well established environmental cause” connecting the disease to specific geographic areas.
Papillion says Hollister does not necessarily have a high prevalence of lupus. She is sure about one thing, though. “Nobody knows the cause,” she says.
Supporting the struggle
While now in remission, Mifsud will never fully escape the disease. Neither will Klauer, Della Martinez, Joan Sattler or anyone else in the area with lupus. Even if the symptoms fade, even if a person’s case is mild. It’s always present, hidden. There’s always potential for another destructive flare.
“I don’t think about it,” Mifsud says. “I just don’t. I try to focus on what I can do.”
Mifsud says she learned to pace herself to avoid a major relapse. Sattler, also from Hollister, watches herself and has given up dancing because the activity is just too risky, and painful.
“Oh boy, at one time dancing was everything to me,” Sattler says. “I could dance 23 hours a day. Now I’d be grateful to even walk without pain.”
Sattler can clearly remember her disease at its worst, though. And she never wants to return there again.
She says family and friends, even while at her lowest point, didn’t truly understand her agony. Sattler recalls the repetitive thoughts inside her head each time she pretended to others, on the outside, to feel normal: “If you only knew how I feel right now. I’m ready to scream, I feel so bad!”
Mifsud says the overall awareness has improved since her diagnosis in 1978. National and regional organizations, such as the LFA and Bay Area Lupus Foundation, have helped the cause.
Klauer remembers a time decades ago when several local women with the disease were placed in mental hospitals because “doctors thought they were crazy.”
More people are aware in SBC because someone in their family, or a friend, has the disease.
“It seems like everyone knows someone who has it,” says Martinez, who co-founded Hollister’s Lupus Support Group in 1975 with Mifsud.
After a year and a half hiatus because of low attendance, the Lupus Support Group began again at the end of 2002 and meets the second Monday each month at Hazel Hawkins Hospital.
Mifsud says the group doesn’t follow a formal structure and it is not affiliated with larger organizations. They don’t even necessarily discuss the disease, she says.
It’s just a place to talk.
Mifsud feels fortunate because she’s always had the support of her family, too. During Mifsud’s worst period with lupus, the family would often gather in her bedroom and play Trivial Pursuit while Mifsud lay in bed.
But it’s that kind of support, Mifsud says, that many people just don’t have.
She talks about “horror stories” of people with lupus – many times single women she’s seen with small children. Women with nowhere to go for comfort.
“To be alone like that and to be so severely sick,” Mifsud says. “We’ve got to think this out here. We’ve got to do something for these people.”
