Maggie Gonzales has lived with lupus for most of her 46 years, but wasn't diagnosed until her 20s, after the disease had damaged her liver and kidneys. Today, this New Jersey mother of three struggles with her illness while working to spread awareness of lupus among Hispanics. Three years ago she helped to establish the S.L.E. Lupus Foundation's Lupus Cooperative of New York, Bronx Division. In this interview, Maggie shares some of her struggles to raise a family while coping with lupus, and her hopes for promoting awareness of the disease among people in the Hispanic community..
How has lupus affected your life?
Maggie: So many ways . . . most painfully, I suffered a flare up in the ninth month of pregnancy with my youngest son, and as a result he was born hearing-impaired. Lupus has also burdened our family financially— from the hospital stays to medication costs. Recently, I developed severe photosensitivity. My nine-year-old son, Justin Ryan, wants to go out to play baseball and swim, but I can't be in the sun or I'll break out in a rash or even get so sick that I need to be hospitalized.
What prompted you to get involved in helping to start up the Lupus Cooperative of New York's Bronx Division?
Maggie: I grew up in the South Bronx. This community was so underserved. There was no place for people with lupus to get advice, education, or support. Because I personally felt a need within that community, I joined with the Foundation and we were able to expand services of the Cooperative's Northern Manhattan Division to the Bronx. Both are a division of the Cooperative of New York, a network of health and supportive services designed to improve the quality of life for people with lupus and their families.
What gets you through the day?
Maggie: I cope with lupus by writing, singing, journaling, and educating people about lupus. On any given day, I know I need to wake up the next to see my children grow. I have to take my youngest to school and make his life as normal as possible. I need to be alive.
What would you say to other Hispanic women about lupus?
Maggie: Hispanics need to be more aware of lupus because they (and people in the African American community) are at greater risk for it. Early diagnosis and prompt treatment are the best prevention against lasting damage. I know this first-hand. Twenty years ago, when I was in the hospital and unable to move, with swollen joints, fever—all the symptoms—lupus wasn't even mentioned. My father and sister had lupus, but I didn't know enough about it— I didn't realize I was at risk.
When I was finally diagnosed, the doctor said to me, "You must have had lupus for a long time for it to be this bad, to be so out of control." That's how misunderstood and unrecognized lupus is. (The Foundation is releasing a Spanish-language TV public service campaign this fall that will reach out to the Hispanic community, alerting them to the warning signs of lupus.)
What is the greatest challenge you face, living with lupus?
Maggie:I struggle with getting friends and family and people in general to understand this awful and complex disease. People always tell me, "You don't look sick." I wish I could get people to understand why I feel so tired. I tell myself that I am not dying with lupus, I am living with lupus! I want to see my child play baseball, to go out with my husband. Everyday I pray for a cure, if not in my lifetime, then in my children's lifetime.