MANILA, Philippines -- She looks straight into your eye and asks you what you want for dinner. She goes immediately to her waiting chefs in the kitchen. She may even prepare the dish herself. Then, without missing a beat, she walks back and resumes entertaining her 10 or so other guests.
If you were a guest at her household, and observed her in one of her frequent get-togethers with her family and friends?how she moves and interacts?you wouldn?t have an inkling that Luisa ?Lisa? Cojuangco Cruz (San Miguel Corp. bigwig Danding Cojuangco?s youngest daughter) has been a lupus sufferer for 12 years.
Lisa treats her disease like an unwanted guest. She didn?t invite it in, but now that it has gate-crashed into her life, she deals with it in her own terms.
She has thrown everything at it, spending as much as P300,000 a month to ?know the enemy? and keep it locked up in the basement, so to speak.
But her lupus is a strong, feisty enemy itself, and sometimes it breaks loose and wreaks havoc with her system. Lisa?s husband, cardiologist Nick Cruz, narrates that when this happens, his wife is overtaken by lupus ?flares.?
Lisa?s household, however, is prepared for just these occasions. Her precocious twins?a girl and a boy named Sophie and Santi, respectively?are aware of their mother?s condition, and they frequently hug her and assure her she would be all right.
That isn?t unlike what Lisa has been doing, more or less, for other lupus patients. She had founded the Lupus Inspired Advocacy project (Luisa) in January 2005 with the ?Friends of Lupus? and the Rheumatology Educational Trust Foundation Inc. Luisa is a support group for lupus patients and their families. It also seeks to educate Filipinos about lupus, support research efforts, improve national awareness of its complications and build a strong support network among local and regional lupus patient support groups.
Still mysterious
Lupus, an autoimmune disease, is still largely a mysterious affliction. It has no cure, and treatment only keeps the various symptoms in check.
Luisa had recently conducted a research project aimed at finding out the economic bracket of Filipino lupus sufferers. Sampling a population with an average age of 32 and its lupus patients having had the disease for an average of five to six years, the study discovered that a majority of the respondents fell in the low- to middle-annual combined household incomes (a range of P30,000 to P140,000). The study went on to conclude that 18.54 percent of the population allotted more than 50 percent of their budget for lupus treatment, translating to around P7,000 to P8,000 per month.
Most serious form
Lisa?s lupus is particularly nasty. SLE, or systemic lupus erythematosus, is the most serious form of the disease since it can potentially affect many parts of the body such as the joints, skin, kidneys, lungs, heart and the brain.
SLE?s most common victims are women of child-bearing age (almost 90 percent of SLE cases). But it can also occur in children, males and the elderly.
Despite some restrictions, Lisa lives almost normally. She needs to apply sunblock every time she goes outdoors, though.
As an autoimmune disease, lupus ?fools? the body?s immune system into attacking itself. This becomes dangerous when the attack involves the kidneys, brain, heart and the blood elements. Patients with severe lupus oftentimes die from kidney failure or infection. Lupus patients are prone to infections because of not only their abnormal immune systems but also the immune-suppressing properties of the drugs patients take to control the disease.
But Lisa?s lupus has fueled more her desire not to surrender to the disease. A self-confessed former ?spoiled brat? who wouldn?t take no for an answer (picture Eugene Domingo?s movie character ?Kimmy?), Lisa has channeled all this aggressive energy to living a life dedicated to fighting her disease and motivating other patients to fight theirs as well.
?Her strong personality is pushing the Philippine lupus advocacy project to its active state,? says Lisa?s physician Sandra V. Navarra. This, in turn, makes the research of lupus a ?very vibrant? endeavor to get into, she adds.
Navarra is an associate professor of medicine (rheumatology and clinical immunology) at the University of Santo Tomas Faculty of Medicine and Surgery. She is currently the principal investigator and member of the steering committee in phase 3 of the BLISS-52 study (the first of two Phase 3 trials in systemic lupus. A drug is being developed by Glaxo Smithkline and Human Genome Sciences for ?patients with serologically active systemic lupus erythematosus?).
National agenda vs lupus
The Luisa project recently held a small press conference at Cruz?s New Manila house. It is now helping formulate a national agenda against lupus, especially in the research and education field.
GSK?s interest in lupus, for its part, stemmed from the positive results of phase 3 of its project with Human Genome Sciences for Benlysta in the treatment of SLE.
Navara disclosed that, for the first time in 50 years, an investigational human monoclonal antibody drug for lupus patients had showed potential. (GSK claims, further, that this is the first for lupus to reach this advanced stage of clinical development and achieve positive results, conducted in the largest randomized placebo-controlled clinical trial ever completed for SLE patients.)
Lisa was diagnosed with SLE in 1997, after noticing butterfly-shaped rashes appearing on her face. Facing a 75-percent chance of being disabled by lupus, Lisa wasted no time using all her resources and her energies in learning more about the disease.
That is why she will never put off for later what can be done now.
And before you know it, your food is served just the way you asked for it.