Understanding Lupus: An Unusual Disease

Raquel Mathay and her newly born grandchildren, Sailor and Marina, supporting Lupus Awareness Month.

Justin Mathay

Raquel Mathay and her newly born grandchildren, Sailor and Marina, supporting Lupus Awareness Month.

My mother, Raquel Mathay, 60, is a grandmother of three and a mother of four. Despite her energetic and blissful attitude, she was diagnosed with lupus in 2008, experiencing side effects such as extreme fatigue, joint pain and common feverish feelings.

“Today, I’m home and I couldn’t get out of bed. I get aches in my joints and depression gets to me also,” she said. “Especially here in the Philippines, no one knows much about it. Today is May 15, Lupus Awareness Day, and I will wear purple. I am sure I will be alone.”

The month of May is dedicated to supporting those who have been diagnosed with Lupus. Activists use the color purple to raise awareness and support for the battle against the disease.

Lupus is an unusual chronic autoimmune disorder. It can affect the skin, joints, heart, lungs, kidneys, and other organs.

Symptoms vary depending on the genetics, heritage and upbringing of the individual diagnosed. It attacks healthy cells and body tissue, which can cause joint pain, swelling, hair loss, mouth sores and scarring.

The Lupus Foundation of America estimates that approximately 1.5 million Americans and at least 5 million people worldwide have lupus.

The foundation also estimates that more than 90 percent of people who are diagnosed with lupus are women, mostly between ages 15 to 44. Hormones specific to women make them more susceptible. While lupus is widespread, it lags behind many illneses when it comes to recognition and  fundraising.

The public unfairly scrutinizes celebrities who have experienced changes due to the disease, including Seal, Michael Jackson,  Flannery O’Connor, Toni Braxton, Teddi King, Lady Gaga, Nick Cannon, Sophie Howard and Tim Raines.

The late King of Pop, Jackson, was commonly criticized for the complexion of his skin and his sensitivity to sunlight, a common enemy of lupus. The famous facial scars along the sides of Seal’s face are permanent body scarring due to the disease.

The main cause of lupus is unknown. Genetics play a major role. To date, there is no cure.

A multitude of activists, media sources and celebrities participated in the May 15 “Put On Purple” event. Raising awareness of lupus, or any disease for that matter, is crucial to finding a cure.

“To the people unaware of lupus, please make an effort to learn more about this disease and help us find a cure. also so that you will understand people who are suffering from lupus,” Raquel  said. “I usually get comments like, ‘oh, you look so well, I don’t think you have lupus,’ but what they don’t know is that it’s not easy to cope. If only they were more aware, they would understand people with lupus more.”