Many people don't know what lupus is. Among the many misconceptions is that it is a form of cancer or that is contagious. These are farthest from the truth.
For some Filipinos including this writer, the first they heard of lupus was during the time of the late Philippine President Ferdinand E. Marcos. He is known to have died from complications of the disease. It was a disease that was mostly kept secret from everyone except perhaps his doctors and close family members.
For Marcos, keeping it a secret was more for political reasons. But for some lupus patients, being quiet about their disease is prompted by the stigma attached to it. In many cases, they don't even know they have it. Lupus is probably one of the most misunderstood and frequently misdiagnosed health conditions.
For lupus patients like Christine, she looks in a state of perfect health when she's seen out and about. It is when she suddenly can't get out of bed, or when she is rushed to the hospital emergency room, that the real serious impact of lupus sets in.
For Christine, lupus affects every part of her being -- from her brain to her skin. A bad lupus flare will put her into the hospital with intense pain throughout her entire body. Her migraines flare, her body swells, and her bones feel like they have been crushed with a hammer. "It gets difficult to breathe," she says, "or to move and even to think." During severe flares everything stops. Lethargy and weakness are also a part of a flare, and for the most part, there are no indicators of a coming flare.
Christine's mom is Filipino and her dad is part Irish and part German. Like with most Filipino families, Christine and her four siblings were constantly surrounded by love (they spent most of their childhood at the grandparents' house) and food. While Christine has never been to the Philippines, her grandma talked fondly of the homeland. "She would tell me that because of my light skin I could be an actress in the Philippines," she quipped. Her grandma passed away in 1995, and some in the family believed that she also may have had lupus. Lupus is partly genetic, and evidence shows that it runs in some families, especially among the women. Nine out of ten people diagnosed with lupus are women.
Christine wasn't officially diagnosed with lupus until 2002. In 1989, she fell ill to a bleeding disorder known as Thrombotic Thrombocytopenic Purpura at age 14. She was taken to the ER by her parents after a trip to Disneyland. "When we arrived at the ER, they discovered my platelets were at zero level and the rest of the lab results were completely out of whack. My parents were told that I would not survive."
A blood disorder is one of the eleven criteria (http://www.lupusresearchinstitute.org/lupus-facts/lupus-diagnosis) used by doctors to officially diagnose lupus. Having four of the eleven criteria would constitute a lupus diagnosis. Today, Christine has had all eleven markers for lupus, including a "butterfly" rash across the face which is one of the more common outside manifestations of lupus.
"The worst part of lupus for me has to be the effect it has on my brain and my normal day to day life. Dealing with the bleeding disorder and the many symptoms of lupus has been easy compared to the thoughts that I have when dealing with damage to the brain. Some days it's hard to put together complete sentences. I often remark to my doctors that I'm surprised that I can still sometimes carry on a full conversation."
Lupus can affect personal relationships as well, as Christine attests: "I never thought that my illness really affected relationships until later in my life when I began to believe that nobody would want to take care of a woman who has such severe illness.
I haven't had much luck in personal relationships as I tend to push people away when they get too close. I am very lucky however to have a few select close friends and family members who have always supported me and have done everything to understand what I am going through."
Christine says she has a wide circle of supporters including Filipino friends and family. In college she was the secretary of the Filipino student union at Mission College in Santa Clara California. "Through the FSU I met some of the most amazing people who are still here for me today. I also have a number of Filipino friends who have been diagnosed with lupus as well. I have found the Filipino community as a whole to be loving, considerate and very understanding. They have a compassion that can be compared to no other. I am proud to say I am Filipina!"
Christine refuses to let her lupus slow her down. In fact, her lupus has encouraged her to be an advocate for others with similar illness.
She has volunteered to be the social media director of the Lupus Foundation of Northern California, providing crucial information, resources and support referrals to many, especially those who are newly-diagnosed with the disease. She also has trained to be an instructor for the foundation's patient education classes. Alongside, she continues to benefit from the foundation's support groups and lupus buddy program while helping raise awareness and funds for lupus through the annual 5K Run and Walk and other events.
Communities of color are disproportionately affected by lupus. In many ways, through her advocacy and willingness to open up about her disease, Christine has put a face to lupus. And a Filipina face for that matter.
(For more information about lupus and the Lupus Foundation of Northern California, visit www.lfnc.org).
Rene Astudillo is a writer, book author and blogger and has recently retired from more than two decades of nonprofit community work in the Bay Area. He spends his time between California and the Philippines.
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