BY MICHELLE SMITH
Last year I was asked to write about Lupus. “The Disease of a 1000 Faces”. Lupus has become a disease that is affecting individuals in our own community more often than you know. May is Lupus awareness month and like all illnesses, as your advocate I will continue to share information and encourage awareness and support.
No one knows for sure what causes lupus, but what we do know is that, in lupus, the immune system (the body’s defense against viruses and bacteria) is unable to tell the difference between intruders and the body’s own tissues. Trying to do its job, it attacks parts of the body, causing inflammation and creating the symptoms of lupus. Until science fully understands how the immune system works, the specific cause of lupus remains unknown.
As your advocate it is very important for you to understand the necessity surrounding explaining your symptoms properly to your doctor. Persistence is the key when navigating the healthcare system. It can change your health care outcome significantly. Symptoms are the only signs that doctors have to work off of when trying to treat you or diagnose you. One of the common issues that I find is people trying to do it on their own. Very often I will hear that I looked up the information up on the internet or I’m going to see someone in alternative medicine like a naturopath or even I will often here “oh my friend told me”. But there is no greater disease than “lack of knowledge”. For example lupus symptoms vary from person to person and can include fatigue, joint pain, swelling, rashes and fever. And since no two cases present exactly alike, lupus is notoriously misdiagnosed as rheumatoid arthritis, a virus or something else. The condition can harm the skin, kidneys, heart, nervous system, blood cells and more. Despite being a disease doctors often miss lupus is actually quite common. According to Health.com about 1.5 million people in the United States have lupus and it is estimated that it affects over 1:1000 Canadians. The use of a health care advocate can help you through any journey that involves tackling the healthcare system.
With lupus attaching itself to many ethnic groups, I just wanted to let you know that you are not alone. I myself used to think that lupus was not a “Black Disease” until I learned that Rapper Trick Daddy and many other celebrities suffer from lupus.
Lupus is not contagious and is not related to AIDS or cancer. It belongs in the family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes and scleroderma. The most common type of lupus is SLE (systemic lupus erythematosus). It is a complex and baffling condition that can target any tissue or organ of the body. There are other types of lupus which mainly affect the skin, Discoid lupus typically causes sores on the face and scalp but can affect the skin anywhere on the body. It can also cause hair loss. People with discoid lupus are often sensitive to ultraviolet light. Discoid lupus erythematosus lesions are seen on the face of musician Seal. A few individuals develop drug-induced lupus as a response to some medications used to treat other conditions. These symptoms disappear when the person stops taking the medication. Anyone can get lupus: women, men and children. Women are eight times more likely than men to get lupus, however in those between the ages of fifteen and forty five both sexes are affected equally.
Famous Rapper Snoop Dogg’s daughter has lupus as well. They say women of color are two to three times more likely to develop lupus than Caucasians. Singer Tony Braxton was diagnosed with lupus. Hispanics are also two to three times more likely to be diagnosed with lupus. Popular pop singer Selena Gomez was also diagnosed with lupus. Let’s not forget Mariah Carey’s ex entertainer and TV personality Nick Cannon announced in 2012 that he has lupus.
For the treatment to be successful, it is important that treatment is started early in the disease. Early diagnosis is essential. Patients with lupus should eat a diet low in sugars and carbohydrates, low in fat, high in fibre and with moderate amounts of protein. Patients who reduce their intake of red or white meat (including chicken) in favour of fish and plant proteins do better. Abundant Omega-3 supplements are advisable, 3,000mg being the minimum. Smoking is an absolute no. Exercise is encouraged for various reasons. Apart from the beneficial effects on the cardio-vascular system, it also counteracts the insomnia many lupus patients often suffer from.
Your Knowledge about your illness and understanding your symptoms is vital to receiving the best care and makes you the most important member of your health care team.