Keelan’s Story and how she discovered that she had Lupus
They say that there’s nothing like a mother’s love for her child. When it comes to my daughter, Keelan, sacrifice and unconditional love is the most challenging yet rewarding blessings of motherhood. My account of my daughter’s struggles with a disease that is debilitating and incurable, is based on her writings that she shared over the years on her blog, kikiculture.com. Keelan has experienced some good, normal days but many more painful days over the past seven years.
Keelan is a brilliant, soft spoken, creative and beautiful 25-year old, wise beyond her years. She is a mix of African American and Yemeni from my side of the family and French Caucasian from her father’s side. At 15 years old, Keelan started showing unusual flu-like symptoms. Keelan was an honor student, very active in extracurricular activities like charity work and soccer, full of life and vitality. She started feeling weak and often nauseous in the mornings. Most mothers would suspect that their daughters had gotten pregnant. Though Keelan was throwing up in the mornings, I felt strongly that she was not yet sexually active. As the weeks passed, Keelan’s condition had gotten worse where she was missing many days of school, though she was not sick every day. I would leave for work early, leaving Keelan in bed and then come home in the afternoon where I would find her still weak, nauseous and her kidney area hurting her. I called these episodes which occurred on an average of a few weeks per month. Keelan had no energy to get out of bed. Going to the countryside clinic on a regular basis for some kind of diagnosis was futile as doctors only gave her enemas and laxatives, not knowing how to treat her. After three months of no relief, I asked her general practitioner for a referral to have extensive tests done. We determined that the pain that Keelan was experiencing may be related to her kidneys.
Friends, family, doctors and the very concerned Taos community all offered well-intentioned advice as to what they thought could be Keelan’s problem. From sickle cell to mineral poisoning – all were trying to diagnose Keelan’s illness. Between Holy Cross Hospital in Taos and Presbyterian Hospital in Albuquerque, Keelan underwent a battery of tests over a course of two months. The tests included an urinalysis, kidney and liver assessment, and diffusion MRI to determine if Keelan had Multiple Schlerosis, cancer or leukemia, sickle cell anemia, MS, kidney disorder or disease, or heart disease were all ruled out. Her nephrologist sent Keelan off with more laxatives, concluding that her problem may have been blocked intestines. When I realized that Keelan would need more care, I decided to work part time at a local gallery, and I opened an art gallery at my home studio to be closer to Keelan. This was not easy, often working 16 hour days to keep up, including weekends.
Keelan moved to Los Angeles when she graduated from Taos High School in order to live with her father and attend the Art Institute of Hollywood. My art business took me to Shanghai for long periods of time. Keelan needed care and she was often too weak to hold a job and go to school simultaneously. On one of my visits to LA from China, I decided to search for another doctor who could possibly diagnose Keelan. Because I could only afford a basic Medicaid insurance policy as I claimed low income due to my business expenses in China, I took Keelan to doctors who were covered under that plan. One doctor read Keelan’s thick medical records and told me that ‘as a single mother, my daughter had been fabricating her illness all those years because she doesn’t get enough attention from just one parent.’ This doctor deduced this finding after asking Keelan questions about her episodes and then questions about her home life. I grabbed Keelan and we immediately left that office. I realized at that point that getting any more comprehensive testing and knowledgeable care for Keelan would be too costly for me in the US.
I decided to have Keelan pack her bags and we flew to Shanghai together. It wasn’t until I took her to doctors there and they ran an in-depth Antinuclear Antibody test (ANA) on Keelan which revealed that she had lupus nephritis, a form of Systemic Lupus Erythematosus. I was told that lupus is a disguised chameleon of a disease. The symptoms can be diagnosed as multiple sclerosis, some forms of cancer, sickle cell anemia, kidney disease, diabetes or anemic disorders. It is not known what causes lupus nor if it is hereditary. Recent research estimates that at least 1.5 million Americans have lupus, though little research is done on the disease and the actual number may be higher.
After doing some research of my own, I found out the following facts about this incurable disease:
• Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
• Lupus is not contagious, not even through sexual contact.
• Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease.
• Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
• It is believed that 5 million people throughout the world have a form of lupus.
• Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
• Women of color are 2-3 times more likely to develop lupus.
• People of all races and ethnic groups can develop lupus.
• More than 16,000 new cases of lupus are reported annually across the country.
Next segment: Lupus: Searching for Answers through Clinical Trials, Symptoms Diagnosis and Alternative Treatments
List of Resources:
Lupus Foundation – http://lupus.org (research and statistical data on lupus)
Lupus International – http://lupusinternational.org (global support for lupus patients)
Life with Lupus – http://lifewithlupus.org (online support group)
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