By Jullie Y. Daza
Photos by JYD
Although it is usually described as a rare disease, lupus can attack anyone young or old. Its preferred targets are 90 percent women in their child-bearing years, between 20 and 40, and while it need not be a death sentence, living with the illness means lifestyle changes, visits to the doctor, and a large dose of optimism, “setting goals and working hard to accomplish them to keep us moving forward.”
That is the message of a very busy, very active 30-something Emmeline Aglipay Villar, Diwa party-list congresswoman, wife of DPWH secretary Mark Villar, and mother of 18-month-old Emma Therese. Her book, Living Better With Lupus, aims to reach patients diagnosed with the disease and those who have it but are baffled by it or do not know they have it.
With its wide range of symptoms, from butterfly rashes to psychosis, athritic pains and depression (usually caused by the loss of self-esteem) and other organs besides the kidneys which could be affected, “even doctors make mistakes” in diagnosis and treatment. Lupus “flares” comes in cycles with differing degrees of frequency and intensity or weakening.
Dr. Geraldine Z. Racaza and Rep. Villar share the stage with Emma Therese.
Emmeline started her Hope for Lupus Foundation three years ago to share what she has learned from her experience, which first came to light 16 years ago. She wanted to understand what was causing her feet to swell and her hair to fall, but instead of moping and feeling sorry for herself, she carved out her goal: to raise awareness and save lives with prompt and proper treatment.
Co-authored with Drs. Angeline Magbitang-Santiago, Evelyn Osio Salido, and Geraldine Zamora Racaza, the book is available at National Book Store. One hundred percent of its proceeds are earmarked for the foundation, which conducts exhibits, meetings and other activities.
At the launch, the foundation presented doctors and patients who talked about living life with lupus. Her friends and family were present to provide moral support, including more than a handful who know what she’s talking about, being survivors themselves. As the book puts it, “There is still no cure for lupus but its symptoms can be managed, and remission is attainable.” If Emmeline can do it, her doctors say, so can the others. Her story is an example of how one can conquer lupus and live a full and fulfilling life despite the illness.”