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It’s complicated

By: Jullie Y. Daza

HAIR loss. Depression. Swollen joints. Rashes. Mouth sores. Shortness of breath. Unexplained fever or fatigue. A collection of symptoms signifying what? Old age? Pregnancy?

Clue: The disease shows a 90 percent preference for striking women in their reproductive years. The 10 percent of men who get it included one Ferdinand Marcos 30-40 years ago.

What little we knew then of lupus has not increased by much today. (During Martial Law, rumormongering – today’s “false news” – was a crime.) But even without censoring the news or struggling to understand the disease – for example, it need not be a death sentence – lupus continues to be so complicated “even doctors make mistakes,” according to Diwa Rep. Emmeline Aguilar Villar when she launched her book, Living Better with Lupus, co-authored with Drs. Angeline Magbitang-Santiago, Evelyn Osorio Salida, and Geraldine Z. Racaza.

Emmy has lived with lupus for 16 years. Her mother, Mawie Aglipay, thought it was triggered by on-the-job stress at the law firm where she worked up to 3 a.m. every day. Soon her hair was falling and “her feet were so swollen they could not fit into her shoes.”

At the launch, Emmy’s Hope for Lupus Foundation presented survivors who talked about living with lupus. One of them suffered from allergies, mouth sores, arthritis, butterfly rashes. “I was so weak I could not hold a glass.” The second girl developed an abscess in the brain, which then had to be drained, which then led to a total wipeout of her memory. The third spoke of “flares,” a period when “symptoms worsen and the disease becomes more active.”

As the discussion progressed, someone mentioned that Lady Gaga “has lupus although it has not flared up.” Bobby Yan said he had a girlfriend with lupus. His co-emcee, Trish, underwent chemotherapy. Lisa Cojuangco Cruz, wife of a prominent cardiologist, admitted, “I have lupus.”

Emmy hopes the book will teach how “to live well with lupus.” Its most readable chapter consists of 10 pages of answers to the most frequently asked questions. For her mother-in-law, Sen. Cynthia Villar, the next step should be to reproduce parts of the book in summary form and in Filipino.