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| Join me "Toni" in my efforts to support Lupus Hawaii!
| Like most people, Toni, a 24-year-old HPU student graduate working on a master’s degree in communication, wonders, every morning, if she’s going to have a good or bad day. For Toni, though, the question is more complicated than it is for most (99.5 percent) of Americans. Toni isn’t your average 24-year-old college student. She has lupus, a disease two-thirds of Americans, about 200 million people, have never heard of, according to the Lupus Foundation.
Living with Lupus
Toni was diagnosed in 1998 at the age of 13, and she has been coping with lupus ever since. Her visual symptoms showed fevers, weakness, fatigue, loss of appetite, and weight loss. Internally an ultrasound showed a large mass of fluid surrounding her heart. Lupus tends to flare up expectedly, so one of the things Toni had to adjust to was feeling fine one day and being in pain the next. And despite the fact that no one can predict how long a flare will last, Toni was able to carry on a pretty “normal” life, with the exception of a daily cocktail of pills and numerous doctor examinations. As time progressed and her lupus showed no signs of activity, her medications were even lowered. And while she couldn’t play sports in high school, she did have a boyfriend. But when, as happens to most of us in high school, they broke up, the experience was so stressful that her lupus flared up, attacking her joints and muscles so severely she was hospitalized for several days.
In 2004, as an undergraduate at HPU, her lupus became active once more, this time affecting her kidneys. The stress of a biopsy to determine the extent of kidney damage brought on a painful shingles rash. By the time the shingles were cleared up, with antibiotics, Toni’s kidney problem was producing severe edema: swelling that went from her toes to her groin and the addition of 30 pounds from water retention. It took months of aggressive medication to reduce the edema, and her lupus went into partial remission. It affected her course work, although she eventually got everything caught up.
What is Lupus?
Lupus is an autoimmune disease in which the body’s immune system attacks the body itself because it doesn’t recognize the body’s cells, tissues, or organs. Instead it sees them as infections or as foreign objects and tries to destroy them. Lupus is the short name for systemic erythematosus (also referred as SLE), an inflammatory condition that can be long lasting but not necessarily constant.
Many lupus patients experience differing levels of lupus activity, with periods of remission alternating with periods of new or recurring symptoms. These are called flares, and they can last a day or a week, or even a month or more. One can be in remission for long periods of time; however, the lupus never goes away.
There are two types of lupus: systemic and discoid. Systemic lupus, or SLE, is the most common form, including 70 percent of all cases. It can affect a number of organs or systems within the body, most commonly the kidneys, lungs, heart, joints, nervous system, and blood forming organs. Every case is different. One person might have one organ involved, while another has many organs affected.
Discoid lupus is a chronic skin rash that affects about 15 percent of lupus cases and is nowhere as dangerous as systemic lupus. Some people have both forms.
No one knows what causes lupus, although sometimes it can be induced by medications taken for other medical problems. However, in these cases, people experience the symptoms of SLE but rarely develop serious organ problems, and, usually, when the medication is stopped, the symptoms improve and disappear.
Some people may inherit susceptibility to lupus. Some studies have shown that lupus is more common in families where others have experienced lupus or similar autoimmune diseases, such as rheumatoid arthritis or diabetes.
Some studies suggest that an environmental factor, such as a virus, can jump start symptoms in people who have the genetic vulnerability to receive lupus.
The most vulnerable age for lupus is from 18 to 45. Lupus does appear in children and in older people, but rarely.
Statistically African Americans tend to get lupus more often than Caucasians. Studies also suggest that Asians and Hispanics are more at risk than Caucasians.
People with lupus are more vulnerable to infections than people without lupus. This is usually a result of medications used to control lupus symptoms: steroids and immunosuppressive drugs. In some cases infections can trigger a flare, so it is important that people with lupus are up to date with their vaccines and get yearly flu shots.
Being in sunlight or certain fluorescent lighting for long periods of time could worsen lupus-caused skin rashes and other lupus caused systemic problems. Studies show that in one out of every three lupus cases, the patient is sun-sensitive. To what degree a lupus patient is sensitive to the sun varies from case to case.
Pregnancy can be really complicated when lupus is involved. In some cases, lupus symptoms may worsen or flare, while in other cases, symptoms could get better or stay the same. The chances of miscarriages, especially reoccurring ones, are elevated in lupus patients. The miscarriage either happens early or late in the pregnancy. The reason women with lupus are at increased risk is because they carry certain abnormal antibodies. If a woman happens to get pregnant in the midst of a flare or high lupus activity, it could lead to many health problems for both the fetus and the mother. Medications that the mother is taking could be dangerous to the baby.
Birth control pills increase the risk of thrombosis or blood clots, so the best forms birth control for women with lupus are diaphragms or intrauterine deceives (IUDs).
Treating Lupus
There is no cure for lupus and it can be really unpredictable, the symptom or symptoms could return at any time. The extent of the disease and how active it its, determines the type and amount of medications prescribed. If symptoms change over time, medications have to be adjusted to target the new symptoms. And if some symptoms disappear, medications used in treating those symptoms may be discontinued.
However, in some cases, to keep the symptoms from returning, the medication may still be part of the treatment, even though the symptoms are gone.
In September of 2005, Toni’s lupus recurred with new symptoms. She was having difficulty breathing and chest pain while she walked. Tests pointed to blood clots lodged in her lungs. This is dangerous because if a clot blocked an artery in the heart, it could cause a stroke or death. Toni was put on a blood thinner called Coumadin that took a year to break down the blood clots.
Recently Toni’s lupus has been the most active by far, and the fatigue and weakness she experiences have made daily chores and tasks strenuous (both physically and mentally). In addition the medications |
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