What you should know about Lupus
LUPUS is a chronic autoimmune rheumatic disease that occurs when the immune system of the body attacks its own cells and tissues. It results in damage to various sections of the body, such as the skin, joints and organs.
Doctors are still not sure what definitively causes Lupus, but it is believed that genes play a role in its development. The sex hormone oestrogen, being pregnant, an infection, and an overexposure to sun are also possible triggers for the disease.
Here are 10 other things you should know about Lupus.
1. There are different types of Lupus. The most common type of Lupus is Systemic Lupus Erythematosus, however, there are several other forms. There are Cutaneous and Discoid Lupus, Erythematosus Lupus, Drug-induced Lupus, as well as Neonatal Lupus which is a rare condition in babies. Lupus is diagnosed by doing an Anti-Nuclear Antibodies (ANA) blood test.
2. Lupus mostly affects women. According to consultant rheumatologist and president of the Lupus Foundation of Jamaica (LFJ), Dr Karel DeCuelaer, the disease affects about one in 300 Jamaican women. Women, he said, account for about 90 per cent of Lupus cases worldwide. "It can start anytime, but mostly after puberty because it is driven by the female hormones," he said. The doctor pointed out that women nearing menopause usually have fewer problems because of their reduced oestrogen levels.
3. Lupus symptoms vary for individuals. Lupus affects people differently. While some people might experience fever, skin rashes and kidney problems, another set of persons might experience mostly joint pains. "I started having a lot of joint pains, like my lymph nodes would swell. There was a lot of weight loss, my hair would just start thinning out, and I had these butterfly rashes," said Lupus sufferer Tamika Michelin-Williams, who was diagnosed in 2004.
4. You can still have a normal life with the disease. While lupus might be fatal for some people, most lupus patients live long, productive lives. Shoyea-Gaye Grant was just 17 years old when she was diagnosed with Lupus, but she was able to secure 10 Caribbean Examinations Council (CXC) subjects shortly after her diagnosis and went on to pursue a psychology and criminology major at the University of West Indies, Mona. "It is a fight and some of us don't look sick, but that doesn't mean that we are not. But it has a lot to do with how you look at the situation," she said. "The perspective has a lot to do with the outcome, so you already have Lupus, all you can do is fight it and hope that one day God heals you, or they find a cure."
5. Treatment can be costly. It can be costly to treat Lupus in Jamaica, because some of the drugs are not subsidised. It will be a cheaper if you have medical coverage, but having none means you'll have to pay full cost. "If you see the prescription for persons with Lupus! When I fill it out, I have to go to the next page," said Dr DeCuelaer before adding, "It is not uncommon to take 12 different drugs. So you can begin to see the financial aspect even if all of them are very cheap. Twelve cheap ones is a big bill."
6. Lupus is most prevalent in black women. Lupus affects mainly younger women, but black women have higher rates of Lupus than any other race. Lupus is said to be three times more common in women of African descent than in Caucasian women and is also more common in women of Hispanic and Asian decent.
7. There is help for you. You will be better able to cope with the disease by talking to others who are diagnosed as well. The Lupus Foundation of Jamaica is one such place where you can receive support and advice. The group has been in operation since 1984 and monthly support group meetings are held at the Girl Guides Headquarters.
8. You should minimise exposure to the sun. In order to live a productive life with the disease, it is important to have a low fat diet and protect yourself as much as possible from the sun, since harsh UV lights may activate the disease. You should also minimise stress and be mindful of the things that cause you to have a flare-up. "I go around with wipes and sanitisers. Even using the (computer) labs, I have to sanitise the mouse and the things before, because people sneeze and touch it and all of that, and when you have Lupus, it's an easy way to get sick," said Grant.
9. It is not contagious. Lupus is incurable, but it is not contagious. Although doctors have yet to find the cure, there are several treatments available that can help to calm the immune system so you will have fewer symptoms and feel less fatigued.
10. The disease is treated by a rheumatologist. Your primary doctor could refer you to someone in this field, or you can search the directory for a rheumatologist who will be able to assist with your diagnosis in the event that you find yourself with any of the symptoms of this disease. These symptoms include fever, fatigue, loss of appetite, weight loss, aches and pains, nausea and vomiting, headache, depression, easy bruising, hair loss and arthritis of two or more joints.