KHARTOUM (Sudanow) - It was with great determination and patience that academician Mawahib Mohammed Sanowsi had managed to overcome a number of fatal diseases, including the incurable lupus. She says what had helped her out of those ordeals was her unswerving confidence in the Almighty, coupled with a strict medical follow up.
As a university student 20 years back, Mawahib contracted the dangerous lupus disease. Lupus, better known as Systemic Lupus Erythematosus (SLE), is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body. Symptoms vary between people and may be mild to severe. Common symptoms include painful and swollen joints, fever, chest pain, hair loss, mouth ulcers, swollen lymph nodes, feeling tired and a red rash which is most commonly on the face. Often there are periods of illness, called flares, and periods of remission during which there are few symptoms.
When she was diagnosed with the disease in 1998, Mawahib was in her first year at the Faculty of Communication, Omdurman Islamic University, shortly after she gave birth to her first and only son Mohammed. But with patience and the help of her parents and husband, she kept studying, scoring excellent degrees, in fact topping her classmates at graduation.
“I kept battling the disease, once beating it and once beaten by it,” Mawahib told Sudanow Magazine in an interview.
At first she started to feel fatigued beside fits of continuous headaches. She used to fall unconscious. One day she was carried on a stretcher to the Military Hospital in Omdurman after she fell unconscious. There the laboratory test showed that her hemoglobin was as low as 20% in a blood sample taken from her spine. Other medical tests diagnosed her with lupus, a disease neither she nor any other member of her family had ever heard of before. She was also told that the disease is a chronic immunity disease and would stay with her as long as she lived.
Her family was panicked and rushed her to Cairo, then to Amman, Jordan, and then to England, in search of a possible cure. The result was the same and the medical treatment was the same: To take her prescribed drugs (cortisone), not to expose her body to sun rays or ex-ray. She started to take 12 cortisone tablets for a certain period of time after which she would check with the doctor. But the doctor unduly kept her under the same doze for more than two years. This caused her a lot of complications. She was also advised to continue to check with a rheumatology doctor after which her condition stabilized somewhat and she continued with her university studies.
Fits of fatigue and headache then returned to her and she developed water in her lungs. The water was removed and she improved. Then she developed a blood clot in her leg from which she recovered. Then she had to remove an inflated spleen. After this her response to medical treatment improved, in fact she was completely cured. Unfortunately she started to suffer spasms in the body which still continue with her, though at distant intervals.
Then she suffered an acute kidney inflammation in 2004 that lowered her morale too much. But with encouragement from her family, she stood fast and was kept on dialysis three times a week. Before and after every dialysis session she used to suffer too much.
But she never lost sight with her education until she was graduated in the university in 2003 and later on obtained her M.A and Ph.D.
She was employed by the National Rabat University, but when fits of illness overcame her, she applied for resignation. “I told them I must leave the job for someone who may need it,” Says Mawahib. After a lot of argumentation the University let her go.
Keeping her under her dialysis routine, her doctors at a certain point realized that her kidneys had started to function normally and there was no need for any more dialysis nor a kidney transplant.
She says she has now started to perform her religious duty of dawn to dusk fasting during the holy month of Ramadan. She began by fasting part of the day, but now and for three years through she managed to fast all day, all month.
She also returned to her work as a university professor. Besides, her doctors started to send her lupus patients for moral guidance. She would also be called to hospital to talk to new cases diagnosed with lupus about her experiment with the disease. She had made lots of acquaintances with such patients and their families.
In 2012 she was hospitalized for body spasms after which she thought of setting an international group on Facebook she termed “Lupus Patients Group” to exchange ideas on the disease and how to live with it. The Group now counts 3000 from all over the world. She also set a WhatsApp group through which lupus patients can exchange thoughts and help each other. Group members often take patients to the doctors when there is need and also give fellow patients moral support. Group members also help patients in need with medicines.
Lupus drugs are very expensive and are not available in Sudan. That has prompted Mawahib and her group members to set a charity fund to help patients in need with the required drugs. Mawahib and her colleagues are now finishing the paperwork for turning the fund into an NGO to help this category. They hope to receive support from charities and able citizens.
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