Learn the Basics of Lupus and How to Live with It

One of the physical manifestations of Lupus is the butterfly like rash in the face. (photo from http://channelfit.fooyoh.com/fitness_health/5895263)

Years of watching House, MD made me watchful of every irregularities and odd feeling in my body. That and the fact that I’ve seen loved ones suffer from terminal diseases, I suppose. It made me more emphatic of friends (and even acquaintances) who would  ask for help (blood donations and prayers) for sick loved ones; and I can say that lending your ears and spending just a little time listening to their woes can make a lot of differrence. It sure made a lot for me when I was in that stage.

Years ago, I came across a colleague from my previous job whose sister had died of Lupus, and though I’ve heard of it from the Hugh Laurie series, it never made such an impact an on me. Then I met someone who is actually battling this condition. I realize that life is indeed like a soap opera, and some people are just so darn good in writing their own stories.

One of the physical manifestations of Lupus is the butterfly like rash  in the  face. (photo from http://channelfit.fooyoh.com/fitness_health/5895263)
One of the physical manifestations of Lupus is the butterfly like rash in the face. (photo from http://channelfit.fooyoh.com/fitness_health/5895263)

She’s cheerful, she’s all cheeky and I’ve never seen her in a dampened mood, even at pressing situations. You’ll never really know what she goes thru behind that smile and  all that Microsoft Excel reports she’s working on. She casually tells me that she’s gained a lot of weight from all the steroids from her medication and I say that it’s doing her some good because I’ve been trying to gain some weight for the longest time. When I asked what the medications are for, she said “For Lupus” without batting an eyelash and continued eating.

I felt terrified, but of course, I  did not want her to see it in my face. If she isn’t scared, why should I? I came back to my desk and read up about it.

Lupus is an auto-immune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue which can result to different symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, heart, and lungs. Some would have swollen hands and feet due to kidney problems; fever of more than 100 degrees F (38 degrees C); extreme fatigue; skin lesions or rashes on the arms, hands, face (where a butterfly shape rash could manifest), neck, or back; anemia; pain in the chest on deep breathing or shortness of breath; sensitivity to light and the sun; hair loss; abnormal blood clotting problems; fingers turning white and/or blue or red in the cold; and seizures.

Under normal function, the immune system makes proteins called antibodies in order to protect and fight against antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue.

There is no single test to diagnose lupus and diagnosing it can be tricky. The disease can mimic other conditions, and it often takes a different course in different people. Many people have it for years before developing tell-tale symptoms. Doctors look for  certain proteins usually show up in a patient’s blood. A blood test for antinuclear antibodies (ANAs) can provide a critical clue. Other lab tests may check cell counts, kidney function, and clotting time. A tissue biopsy of an involved organ such as the skin or kidneys sometimes helps with diagnosis. If your develop an unexplained rash, ongoing fever, persistent aching or constant fatigue, consult your doctor mmediately.

No one knows exactly what causes the body to attack its healthy tissues.  A person may be born with a certain genetic makeup that affects how the immune system functions or makes him or her at risk for lupus. A combination of factors can trigger the autoimmune process, some of which may affect one person but not another. According to the Lupus Foundation of America (LFA), 1.5 to 2 million Americans have some form of lupus. The disease affects both males and females, women are diagnosed 9 times more often than men, usually between the ages of 15 and 45. African-American women suffer from more severe symptoms and a higher mortality rate.

Lupus can remain dormant for years but can be triggered/worsened by several factors such as:

  • Exposure to ultraviolet light, usually from sunlight
  • Smoking may increase the risk of getting lupus and may make the disease more severe.
  • Some medicines are suspected triggers of lupus and symptom flares.
  • Chemical exposure has been reported to trigger lupus. Suspected chemical toxins include trichloroethylene in well water and silica dust. Hair dyes and straighteners, linked to lupus in the past, are no longer considered to be lupus triggers.
  • Some infections are suspected triggers. Some people who have cytomegalovirus (CMV), parvovirus (such as fifth disease), and Hepatitis C infections eventually develop lupus. The Epstein-Barr virus has been linked to lupus in children.

Aside from the inflammation in the  kidneys, brain, blood vessels, lungs and heart, having lupus also increase your risk of:

  • Infection. People with lupus are more vulnerable to infection because both the disease and its treatments weaken the immune system. Infections that most commonly affect people with lupus include urinary tract infections,respiratory infections, yeast infections, salmonella, herpes and shingles.
  • Cancer. Having lupus appears to increase your risk of cancer.
  • Bone tissue death (avascular necrosis). This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone’s collapse. The hip joint is most commonly affected.
  • Pregnancy complications. Women with lupus have an increased risk of miscarriage. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth. To reduce the risk of these complications, doctors recommend delaying pregnancy until your disease has been under control for at least 6 months.

Living with lupus can have a profound effect on a person’s mental and emotional well-being. You are likely to experience emotions such as grief, fear, anxiety, and depression. Having a chronic, unpredictable disease can cause uncertainty and anxiety and may often wonder how the disease will progress, and how it will be managed physically and financially.

It pays to take care of your body, especially if you have Lupus. Lupus is not contagious and there are no foods that cause lupus or that can cure it, but it is manageable and liveable. One can prevent lupus flares thru simple measures such as:

  • Getting adequate rest. People with lupus often experience persistent fatigue that’s different from normal tiredness and that isn’t necessarily relieved by rest. For that reason, it can be hard to judge when you need to slow down. Get plenty of sleep a night and naps or breaks during the day as needed.
  • Being sun smart. Because ultraviolet light can trigger a flare, wear protective clothing, such as a hat, long-sleeved shirt and long pants, and use sunscreens with a sun protection factor (SPF) of at least 55 every time you go outside.
  • Getting regular exercise. Exercise can help you recover from a flare, reduce your risk of heart attack, help fight depression and promote general well-being.
  • Don’t smoke. Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
  • Eating well. A well balanced diet, though, still plays an important part in dealing with the condition. If you have lupus, following a varied, healthy diet may help: reduce inflammation and other symptoms maintain strong bones and muscles combat.
  • Educating yourself and the people around you. Learn as much as you can about the disease and its treatment. Share information with friends and family members so they will better understand the disease and how it affects you. Their support is important to success in managing the illness.


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