What do you know about lupus? The question was asked of a group of 20 people via a social media website and almost all the respondents gave the same answer-not very much at all."Isn't it a skin disease?" asked one young woman. "It makes your hair fall out," said another. So, what is lupus? Lupus is a hereditary chronic inflammatory disease that occurs when the body's immune system attacks tissues and organs, unable to distinguish the good from the bad. According to information from www.lupus.org, inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart and lungs. The most prominent sign of lupus is a facial rash that looks like a butterfly's wing unfolding on both cheeks. There is no known cure for the disease.
Living with lupus
Doctors confirmed that 30-year-old Stacia Landeau had lupus in 2008, after repeated bouts of illness, which included blood clots in her legs and the inability to move various limbs. Landeau said at first doctors treated the symptoms, ignoring her when she told them her grandmother had both cancer and lupus."I was seeing the same doctor for a year when I got really ill in 2008. It was so bad that I couldn't walk and I couldn't move my hands. I would develop lesions in my head," said Landeau. Finally, after a series of tests the doctor realised she had lupus and prescribed a list of medications. "I was seeing a doctor but I got more and more sick. I even joined the Lupus Society but found it depressing. All we would do was sit and talk about our problems and the types of medication we used, there was nothing positive," Landeau said. After a while the doctor told her to decrease the dosage of her medication, but she got worse. When she told him this, he advised that she increase the dosage. Landeau was eventually rushed to the hospital because of her body's negative response to the changes in dosage of the medication she was taking, which mostly consisted of steroids."My doctor told me he would meet me at the hospital. He never came and I never heard from him again," Landeau said.Tired of feeling sick, and also tired of the additional problems brought on by the side effects of the different medications, Landeau jumped at the opportunity when an aunt suggested she see a doctor in Orlando. Three months later, she saw a huge improvement. She took less medication, and, on the doctor's advice changed her diet, added exercise to her routine and started taking natural supplements. "I haven't had a major illness or been rushed to the hospital since," she said.
The guessing game
For University of the Southern Caribbean student Kevon "Blacks" Edwards, lupus wasn't something he had to live with for very long. Edwards died at the age of 20 on March 18, after finding out he had disease less than a year earlier. In response to Edwards' death, a group of his close friends founded the Lawson Blacks Foundation, to keep their friend's memory alive and educate the public about the hereditary disease called lupus. One of the organisation's founders, Nathan Patterson, shared Edwards' story with the T&T Guardian. "We didn't even know he had Lupus. He didn't know either," said Patterson. "I remember his hair started falling out and the guys on the football team would make jokes and laugh at it. We never knew there was a serious problem," said Patterson. "He would feel sick sometimes and he would go to a normal physician but they didn't pick up on the signs until less than a year ago," Patterson said. "He was told that most people who have lupus don't know they have it. The symptoms tend to mirror other illnesses so it can be a guessing game for doctors. "I didn't know much about lupus before he died but I made it my goal to know everything I could after," said Patterson. Patterson said his friend had been advised to go abroad for treatment.
Medical challenges
General practitioner Dr Allan Hoyte says lupus is just as bad as HIV, except that it cannot be transmitted from person to person. "When lupus attacks a patient, they tend to get ill, then better again, then ill again. "Every time they get ill it can come in the form of a different disease every time," said Dr Hoyte. He describes lupus, the Latin word for wolf, as a strange, sneaky disease that is difficult to diagnose. "The biggest challenge for a doctor may be in actually diagnosing the disease. Lupus can come in different disguises. It may take the form of a heart problem, joint disease, diabetes, brain disorder, every system in the body is susceptible." He says since there is no known cure for lupus, doctors simply has to treat the system that is being attacked by the disease. I started getting symptoms of lupus during my teenage years. It was just around the time I began my menstrual cycle. For years, I experienced body pains, irregular periods, extreme exhaustion and migraines. Over the years, various doctors offered various treatments. Some were sensible, some were not so sensible. "Get more rest. Eat more blood building foods, bhaji and liver. Get a boyfriend. Stop quarrelling with the husband." Unfortunately the disease wasn't properly diagnosed until almost two decades later. This is common with lupus. Little is known about lupus and it is frequently misdiagnosed. Researchers, however, believe that it is highly hormonal and linked to estrogen levels. It is most common among women during their menstrual years. It is during the ages of 18 to 50, we see it manifest its ugly symptoms the most.
It was a long journey to diagnosis but I'm glad I tried a few tricks. Lupus is a tricky disease. For months, I would force myself to go to work with high fevers and swollen joints. When I arrived in any doctor's office, all my symptoms would be gone. The doctor would simply prescribe pain killers or fever reducers. One day I decided to take my mother to a brand new doctor. My mother has rheumatoid arthritis since she was 22. It bent her out of shape. I wanted the doctor to see her and I wanted the doctor to take my complaints seriously. And she did. She forwarded me to a specialist rheumatologist. She told me to take the disease seriously. I had just miscarried a baby, was developing symptoms of an autoimmune disease, had genetic factors linked to lupus and was prone to a variety of serious diseases. The doctor called a number of possible illnesses. The name I remember the most was lupus. Lupus has genetic factors. It is in the family of autoimmune disease. Some researchers say that the disease is usually locked into our DNA. Certain events can 'unlock' the disease and cause the disease to 'wake up.' These events include but are not limited to extreme exposure to sunlight, highly stressful situations, miscarriages, abortions, deaths and divorces. The very patient specialist I was referred to insisted I do several of the same blood tests periodically. For me it was a bother and an expense in time and money. His steroid treatment alleviated the pain. I hated taking the medication. However, I kept going. I didn't want to end up like my mom. The definite positive blood tests came back after several months of visiting the specialist. He placed me on a number of strong meds that have serious side effects. After a few months of feeling better, I did what many naive lupus patients do, I stopped the meds without his consent.
I got pregnant and miscarried again. The lupus flared once more and this time, it attacked my internal organs. This major flare started off as a 'cold' I got from a workman at our home. The cold turned into a fever that kept me up at nights with body pains. A trip and a blood test to the nearest general practitioner confirmed it was dengue. I was sent home, given dengue meds and ordered to drink lots of fluids. Nothing helped. Finally the ambulance arrived. I was taken to the health centre but when I arrived, I was okay. The blood test was done. I had no dengue. I saw the nurses wink at each other as if to say: "This child is tricking." I returned home. The next day, I was taken to another health facility. The lines were long and I was in so much pain. But I was not a priority patient. I left and the next day I was taken to a private hospital. Something was definitely wrong. An observatory laparascotomy was done and the doctors found that my kidneys were infected, my lungs were filled with water, I couldn't breathe without an oxygen mask. My mind was too dizzy to think. My eyes were too blurred to read my Bible. I was too weak to see any visitors. I soon learnt that systemic lupus erythematosus, which I had, can attack just about any organ of the body. This is what makes it so dangerous. Lupus patients around the world are praying almost the same prayer every day. We pray for a cure. We pray for funding to find the cure. We pray that in the meantime less harsh meds can be developed. After this experience, my patient doctor got serious with me. I needed to take my meds and I needed to take it whether I felt good or bad. Also I needed to give up the idea of ever having a child. It would be too dangerous.
I thank God for my husband. He did not give up on me after hearing this awful news. A few days later I went to my ObGyn with a request to "tie my tubes." But I found out I was pregnant. My husband and I had mixed emotions. Should we be happy? Should we be scared? We would have to decide whether we would keep the baby. Fortunately, the rheumatologist offered to monitor me carefully. I would need lots of rest and would need to stay away from the sun. I would need to take my meds and require frequent blood work. My supervisor repeatedly requested that I return to work despite doctor's orders. Of course, I insisted that I had to take care of myself. Each month we spent thousands of dollars on various meds and blood tests and hours at various specialists. I thank God that we had dependable health insurance. Joshua was born on April 23, 2010, at three pounds. Steroid-use throughout the pregnancy-induced preeclampsia. Thankfully, he was and still is a healthy baby boy. Joshua was two in April. I have since left my job as a Special Education Instructor. I told my husband I cannot manage mothering and working outside the home. Many people criticised my move. They just didn't understand that lupus slows you down. Women with lupus often look healthy. In my case, I bloom. I have no outward signs of lupus. I do not have the typical butterfly rash. I have also remained slim despite steroid-use. Almost every morning though, I can barely move. My joints are stiff. Prolonged use of steroids has weakened my bones and there have been days when I could not walk. Nights can be awful. Many nights in the past I got just a few hours of painful sleep. Due to my sunlight sensitivity, Joshua does not get to play outdoors very often. This saddens me. I want him to be a normal boy. As a teacher, I understand the importance of developing all his motor skills. We try to compensate by taking him to the park during dusk dark hours. He enjoys nothing better. Very often Joshua demands an embrace. My arms ache but I hug him and cherish every embrace as though it's the last. I pray God will allow me to live as long as he needs me. I pray he will grow to be a healthy young man. He will have children and the disease will never manifest its ugly face in any generation to come. I pray, like all the millions of lupus victims, here in T&T and around the world that we will find a cure for lupus soon.
