By Jamila Mulindwa
Until a few years ago, Mariam Nassejje Ssebugwawo (33) dreamed of becoming a teacher, now she is simply trying to stay alive.
Ssebugwawo wants to live long enough to see her baby girl grow into a woman though she lives daily in a lot of pain. She is suffering from Systemic Lupus Erythematosus (SLE).
As a young woman, Ssebugwawo thought she had overcome the biggest hurdle of her life when she graduated as a teacher. But right after she had just entered the work world eight years ago, she started to suffer constant exhaustion.
She tried to dismiss the exhaustion as simply overworking herself. But then she started to lose weight, despite making an attempt to eat a lot. Her bouts of exhaustion became such that she found she had to rest for an hour or more during her workday. This was not looking good with her employers and colleagues.
Then one day, her body gave out and she collapsed! She was rushed to Nsambya hospital and her life saved only by put on a machine that supplied her body with Oxygen. She was found to be severely anemic. This was the beginning to many tests to determine what was making her body act this way.
Mariam was put on steroids which helped relief the pain and put on some weight. However all the tests done where negative. After being in and out of the hospital,a doctor friend recommended she undergoes Arthritis screening but also turned out to be negative. Just when she was about to resign herself to not knowing what was wrong with her, a doctor friend recommended she visit a one Dr Kaddu at Mulago referral hospital.
“These tests where expensive, my sister and dad had to chip in so I can afford them” she adds “I did the tests from lancet laboratories and had to wait for seven working days”. After five years, Mariam found out she had an autoimmune disease. But which type?
There many autoimmune diseases but she has a rare one called systemic lupus erythematosus. “The body forms anti-bodies which are not fighting something foreign but the body’s own tissues” Dr. Kikabi Edward an obs and gyn says.
According to Dr. Kikabi, research has shown that a person may have this auto immune disease through a genetic pre-disposition or it could be triggered by a situation for it to manifest.
“SLE can be triggered by UV light,smoking, medication and pregnancy hormones in women and last but not least, low levels of Vitamin C,” the doctor explains.
Kikabi says the biggest challenge is finding out in time. This is because unlike other illnesses, SLE imitates symptoms of other ailments like Malaria, Kidney or Liver disease and others.
Research by American college of Rheumatology indicates there 11 signs of which if a person is diagnosed with 4 he or she automatically has SLE.
Dr Kikabi describes the symptoms, “These include a rush which forms a butterfly like image on your face. The suffer can also have a disc like rush with a shape of a wolf bite, joint arthritis, inflammation of the lung lining.”
Both men and women can be affected by this disease especially those in the 15-45yr age bracket. However women have a better chance of survival than men. Mariam will have to leave with this disease for the rest of her life which has robbed her of happiness. The worst part is that there is no cure for systemic lupus erythematosus.