Seven months after its launch, the Hope for Lupus Foundation, Inc. has come up with a comprehensive guide to help lupus patients and their families understand better and cope with the life-threatening disease.
“Living Better with Lupus” is a very personal project of three-term Diwa party-list Rep. Emmeline Aglipay-Villar, whose own condition she discovered 10 years ago as a young lawyer.
She is married to Public Works Secretary Mark Villar, with whom she has a 2-year-old daughter, Emma Therese.
It took time before Emmeline 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.
The lawmaker said the aforementioned factors became her main motivation to publish the guide.
“After setting up the foundation, I already pitched the idea for a book,” she said in an exclusive interview with Lifestyle. “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 Emmeline 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,” said Emmeline.
“Living Better with Lupus” 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.
Emmeline had valuable assistance from three professors of rheumatology at the Philippine General Hospital. Co-author Dr. Angeline Magbitang-Santiago 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 has published a research paper on SLE, and Dr. Geraldine Zamora-Racaza is involved in various pro-poor voluntary medical efforts.
“This book could be their handbook… because not all the symptoms manifest at the same time,” Emmeline said, referring to patients and their loved ones. An initial 4,000 copies will be available in select National Book Store and Full Booked branches.
Emmeline noted that she wrote the chapter on dealing with lupus during 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.
Emmeline said 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 Emmeline’s womb.
Public Works Sec. Mark was then the Las Piñas representative when he and Emmeline met and fell in love. Emmeline did not hesitate to bare her condition to Mark before they married in 2014.
Emma, who was born a year later, did not have neonatal lupus when she was born. Emmeline, however, acknowledged that she and Mark continue to face many challenges because of lupus.
“Flares” or complications triggered by lupus would manifest at inopportune times, making Emmeline’s condition very unpredictable. Just last summer, she was supposed to join the rest of her family on a European trip after completing her finals for a masters degree in law.
But she was forced to stay in a hospital in Venice due to a flare. This one, however, felt nastier than previous attacks. Mark hastily left Manila to be with her in a hospital that did not have a rheumatologist.
“Mark was with me the whole time,” Emmeline recalled. “He sat beside me, never complaining. He really cared for me. It was a good thing my parents followed to take care of Emma.”
Emmeline said other lupus patients are not as lucky. One elderly woman’s family mistook her symptoms for arthritis and discovered her real condition only after an excruciating migraine.
Emmeline also knows of a domestic help who asked to be allowed to go on vacation in her hometown, not knowing that the long trip and the sudden change in weather would lead to death after a swimming excursion.
“That’s why it was so important to come up with a book that discusses lupus in the Philippine setting. When I was newly diagnosed, I didn’t have any reference material, just information on the Internet which is not always reliable. Also, some of the information are not written by doctors but by bloggers,” she said.
Hope For Lupus Foundation Inc. will launch “Living Better with Lupus” on July 15, 2-5 p.m., at Ruby Jack’s Steakhouse, UG/F City of Dreams, Pasay City.
Original Post: http://lifestyle.inquirer.net/267836/rep-aglipay-villar-living-better-lupus-sharing-tips/