Project Builds Database On Lupus

MANILA, Philippines - It all began as seemingly innocuous rashes on her face which she dismissed as an insect bite.

Robelle Tanangunan generously treated them with creams and ointments until they disappeared. But she would later see them reappear on her arms and hands. After a series of medical visits, Robelle learned she was afflicted with a lifelong disease: Lupus.

Systemic Lupus Erythematosus (SLE) or Lupus is an autoimmune disease which can involve several organ systems and become a chronic, complicated and life-threatening disease, according to the Lupus Inspired Advocacy (LUISA) project, the research arm and promotion arm of the Rheumatology Educational Trust Foundation, Inc. (RETFI).

Rheumatologists are at the forefront of diagnosing and treating lupus patients in the country although they work together with other doctors in completing the care and management of lupus patients.

''My hands and feet became inflamed until I can no longer hold a pen or walk. I had to take a leave of absence from my medicine course as well. Later, I experienced tremendous hair loss and my kidneys had also become affected. Eventually, I had to stop school,'' a teary-eyed Robelle told the media in a conference organized by the Philippine College of Physicians (PCP) Tuesday.

Robelle was not able to realize her dream of becoming a doctor. But today, she is the research coordinator of the LUISA project collecting patient data related to Lupus.

''Lupus is an autoimmune disease which means your immune system attacks itself,'' Dr. Innocencio Alejandro, Philippine Rheumatological Association (PRA) said.

The immune system is the body's defense against diseases.

The LUISA project said approximately 75 percent of patients with Lupus will have abnormalities in one or more vital organ such as the heart, kidneys, lungs and brain.

While there is no formal research database in the country that accounts for the total number of patients with lupus, the combined lupus databases obtained from rheumatology training institutions and various private rheumatology clinics in the country recorded a total of 2,273 patients from 1995 to 2010.

The LUISA project said the average of patients diagnosed with SLE was 29 years old with a strong female predominance. LUISA project data said there were 408 children out of the 2,273 patients and the youngest patient diagnosed was four years old.

According to Alejandro, it is a challenge for doctors to diagnose Lupus because its symptoms do not appear all at once. He said sometimes, it is manifested as rheumatism. At a different time, rashes may appear. Some doctors, he said, might not even recognize it as Lupus but may even mistake it for allergy.

''But we as rheumatologists, we are trained to connect symptoms. We think about them early. If you see any of the symptoms, seek medical consultation early,'' he said.

Lupus is characterized by fever, weakness; the person gets tired easily, weight loss, unusual hair loss, mouth lesions, rashes on the face, neck or arms. The rash may appear as a butterfly on the face - with its center at the nose bridge and its wings on the cheeks.