“Several years ago I started having right knee pain which I ignored blaming it on getting older. I’ve gone from just one knee hurting to hands, elbows and shoulders,” narrates 56 year-old Pamela Kabanda.
She almost always has pain in one spot in her upper left chest and below the right scapula. Always exhausted no matter how much sleep she gets, the mother of six is a woman clearly pushed to the edge.
At times her face is so red as if it has been painted and it is difficult for her to complete certain tasks but surprisingly she lives with the hope that medication will soon help.
Kabanda is suffering from an abnormal condition involving internal organs of her body called systemic lupus erythematosus (SLE).
Other common complaints and symptoms from patients such as Kabanda include low-grade fever, loss of appetite, ulcers of the mouth, nose and facial rash.
When only the skin is involved, the condition is called discoid lupus and characterized by chronic inflammation of body tissues caused by autoimmune disease.
This is an example of an autoimmune disease that occurs when the body’s tissues are attacked by its own immune system as Doctor Ephraim Mugisha, a lecturer at Kampala International University in Uganda explains.
“The immune system is a complex system within the body that is designed to fight infectious agents like bacteria and other foreign invaders,” he says.
He points out one of the mechanisms that the immune system uses to fight infections through the production of antibodies and reveals that patients with lupus produce abnormal antibodies in their blood that target tissues within their own body rather than foreign infectious agents.
“Because the antibodies and accompanying cells of inflammation can involve tissues anywhere in the body, lupus has the potential to affect a variety of areas of the body,” says the university don.
According to him, the precise reason for the abnormal autoimmunity that causes lupus is not known and sometimes they can cause disease of the skin, heart, lungs, kidneys, joints or nervous system.
Research indicates that genetic factors increase the tendency of developing autoimmune diseases thus the disorders are more common among relatives of patients than the general population.
Some scientists believe that the immune system in lupus is more easily stimulated by external factors like viruses or ultraviolet light and is more frequent in African-Americans and people of Chinese and Japanese descent.
Though the disease can affect all ages, it most commonly begins from age 20 to 45 years and both discoid and systemic lupus are about eight times more common in women than men.
It also is known that some women with SLE can experience worsening of their symptoms prior to their menstrual periods, a phenomenon that suggests that female hormones play an important role in the expression of SLE.
This hormonal relationship together with the female predominance of SLE is a focus of ongoing study by scientists.
More serious organ involvement with inflammation occurs in the brain, liver, and kidney. White blood cells and blood clotting factors also can be decreased in SLE, thereby increasing the risk of infection and bleeding.
Statistics show that over half of the patients with SLE develop a characteristic red, flat facial rash over the bridge of their nose.
Because of its shape, it is frequently referred to as the “butterfly rash” of SLE. The facial rash is painless and does not itch.
Along with inflammation in other organs, the rush can be precipitated or worsened by exposure to sunlight, a condition called photosensitivity.
This photosensitivity can be accompanied by worsening of inflammation throughout the body, called a “flare” of disease.
In some patients the blood supply to the fingers and toes becomes interrupted upon exposure to the cold, causing blanching, bluish discoloration, and pain in the exposed fingers and toes.
Since the affected persons can have a wide variety of symptoms and different combinations of organ involvement, no single test establishes the diagnosis of lupus.
To help doctors improve the accuracy of the diagnosis of SLE, eleven criteria closely related to the symptoms discussed above were established by the American Rheumatism Association.
But while other patients accumulate enough criteria only after months or years of observation, those suspected of having SLE may never develop enough criteria for a definite diagnosis.
“When a person has four or more of these criteria, the diagnosis of SLE is strongly suggested,” reads an excerpt from the association’s website.
Despite the numerous developments, there is no permanent cure for SLE and the goal of treatment is to relieve symptoms and protect organs by decreasing inflammation and the level of autoimmune activity in the body.
The good news is that those with mild symptoms may need no treatment or only intermittent courses of anti-inflammatory medications.
But those with more serious illness involving damage to internal organ(s) may require high doses of corticosteroids in combination with other medications that suppress the body’s immune system.
Researchers have reported poor sleep quality as a significant factor in developing fatigue in patients thus the recommended need of more rest during periods of active disease stages.
These reports further emphasize the importance for patients and physicians to address sleep quality and the effect of underlying depression and lack of exercise.
Undoubtedly there is a potentially serious illness with involvement of numerous organ systems but it is important to recognize that most patients with SLE lead active.
Periodic increases in disease activity (flares) are usually managed by varying medications mostly avoiding sun exposure since ultraviolet light can precipitate and worsen the situation.
Pregnant women with SLE require close observation during pregnancy and delivery for they are considered “high risk” due to an increased risk of miscarriages.
Lupus antibodies can be transferred from the mother to the fetus and result in lupus illness in the newborn (neonatal lupus). This includes the development of low red cell (anemia) and white blood cell and platelet counts.