Rep. Emmeline Aglipay-Villar launched recently Living Better With Lupus, which, she says, explains the symptoms, though not readily recognizable, and why so little is known about the disease.
A young legislator, wife and mother, the Diwa Party-List representative adds Living Better with Lupus is a comprehensive guide for lupus patients and their families.
It is a very personal project of Aglipay-Villar, whose own condition she discovered 10 years ago as a young lawyer.
Married to Public Works Secretary Mark Villar, with whom she has a two-year-old daughter, Emma Therese, it took time before she ascertained her condition, since the symptoms of lupus could be mistaken for other medical conditions. Worse, there are only few specialists handling lupus cases in the country.
Seven months after Hope for Lupus Foundation, Inc. was launched, it has come up with a comprehensive guide to help lupus patients and their families understand better and cope with the life-threatening disease.
“After setting up the foundation, I already pitched the idea for a book,” she said. “Many suggested that I talk about my own experience with lupus, but I wanted more than that. I don’t think people would really be interested (in my story) but (more in) something they can refer to. I wanted something that would be really useful.”
Systemic lupus erythematosus (SLE) or lupus is a life-long disease in which the body’s immune system turns on itself and attacks the organs, mistaking them as foreign and harmful.
Common symptoms are the butterfly rash that appears across the cheeks and the bridge of the nose, shortness of breath, painful joints and muscles, frequent mouth sores, excessive hair loss, pale skin, fever and fingers that turn white or blue after exposure to the cold.
Many of the 15 chapters open with short introductions by Aglipay-Villar recalling her experience with the disease. Some chapters have notes written by other patients. “I did not experience all the symptoms, so I invited other patients to share their experiences,” she said.
The book also takes the reader into a friendly Q&A on how the disease affects various parts of the body. The 195-page book also deals with issues that patients and their families are likely to ask.
The legislator had valuable assistance from three professors of rheumatology at the Philippine General Hospital – Dr. Angeline Magbitang-Santiago who helped conceptualize and stage at the Cultural Center of the Philippines the Lupus Butterfly Warriors photo exhibit that highlighted the strengths of lupus patients; Dr. Evelyn Osio-Salido who has published a research paper on SLE; and Dr. Geraldine Zamora-Racaza who is involved in various pro-poor voluntary medical efforts.
An initial 4,000 copies are available at National Book Store and Fully Booked branches.
Aglipay-Villar wrote the chapter on dealing with lupus during her pregnancy. She has a lupus complication called antiphospholipid antibody syndrome (Apas) where antibodies in the patient’s body mistakenly attack the fetus. This condition makes the pregnant woman with lupus susceptible to miscarriages and blood clots.
Her obstetrician had to partner with a pediatric cardiologist when she was pregnant to ensure that the child she carried would remain safe. This meant regular ECGs for baby Emma when she was still in Aglipay-Villar’s womb.
Emmeline did not hesitate to tell Mark her condition before they got married in 2014.