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on Um Zayd wa Atheer (Uganda), 04/May/2012 11:49, 34 days ago
Katusabe JanepherOne of the joys of being a health volunteer is that you never know what's around the corner. It is just the same here in rural Uganda, where many people have given up any hope of resolving their medical problems. Limited access to formal health care and poverty leads many to resort to traditional healers whilst others accept that their conditions are the will of God. Chronic care, orthopaedic and cosmetic surgery are often very neglected. Then sometimes, when they know that there is a foreign health worker around, they unexpectedly reach out for help.This is how I met Katusabe Janepher. Her mother Florence is a village health worker, dedicated to helping her neighbours live healthier lives by education and acting as a health role model, including using a mosquito net and practising hand washing. But Florence could not help her daughter. Janepher had very disfiguring keloids growing from the lobe of both ears. Keloids is a condition more common among Afro Caribbean people and results from an over growth of scar tissue. Janepher's was an extreme case and at 19 she knew she would not make an attractive bride.With no money to travel to Kampala for a consultation and treatment the family came to see me asking for help. I asked colleagues what could be done for her. They confirmed she needed to be seen by specialists but that would be complicated. Many emails and telephone calls later I eventually found a surgeon willing to operate and do the follow up treatment. It was done at the Lacor Hospital here in Gulu. Stage 1 of the surgery was done last month. This removed the keloid (rather like a large bunch of black grapes) from the left ear and started the weekly injection of steroids to stop it from growing back. Janepher returned to me last Monday, ready if not eager for Stage 2, the right keloid.On Tuesday we went to the Surgical Out Patient Department not really knowing what to expect but naively thinking that it would all be straight forward, just like the last first time. As we handed the surgeon's letter through the glass screen I had to squat on a very low stool to make eye contact with the surly receptionist. 'Two thousand', she barked back. 'Go to History'. I joined the queue for History 3, dragging a reluctant Janepher with me who made the mistake of coughing in front of the History Taker. 'Cough, no operation'. I was quick to deny any cough and outside told Janepher not to cough again. 'Go to Doctor's Room 1', another bark.For the next 6 hours we sat with over 200 other surgical patients hoping to be seen that day. In the beginning eyes were fixed on the 6 doctors' rooms and ears begged to hear their names called. As the day warmed up and the waiting room could take no more, but did, eyes became bored and heavy and heads dropped onto chests. Babies sucked half-heartedly on breasts and the elderly sucked their teeth in the absence of food. I didn't dare move in case we missed our turn. Janepher slept throughout. Room 1, the one with the big white stripe, that's what we were told. So we were taken completely by surprise when Room 3, with the red stripe, bellowed Katusabe Janepher. At last we were in a proper queue and given a number, lucky for some number 8 and only another hour's wait.We discussed Janepher's case with the surgeon with interruptions from an irritable accountant. Maybe we should have waited outside but after 7 hours it would have taken a bouncer to get me out of that room. Soon we were upstairs on the ward. Surely, plain sailing from here. Not quite. An expressionless end of shift nurse filled in all the paperwork, even the temperature chart and handed them over to us. 'No beds today, maybe tomorrow'. 'Are you sending us away? The operation is on Friday' 'No! She must sleep on the floor in Room 4'.Room 4 had 8 occupied bed and 6 floor occupants. There was barely space to put a foot let alone a mat but we were not in the mood to be defeated and nobody else looked frustrated by it all. Faces looked tired and resigned, with only one elderly woman managing a weak smile to welcome us. Squeezed up against the end wall the Doctors' entourage soon made their grand entrance for the next act of the drama and mystery. As they moved around the room I counted 9 pairs of shiny shoes and 9 pairs of legs all wearing grey trousers. No female star roles here. I only saw faces or under chins as they approached Janepher. There was more mumbling and more note taking. Janepher does not do small talk. The team moved on and we were forced to hear the stories of those around us. Other than the doctors I was probably the only other person in the room who understood. This was the cancer ward. Oesophagus, pancreas, breast and stomach. Janepher's growths became less significant by far.Katusabe means 'Let us pray'. Yes, I do pray that Janepher's surgery will be successful and that the keloids will not return and blight her life. Now I have met the women of Room 4. Over Janepher's 6-day stay they showed me their wounds, their growths and surgery scars. I will pray for them too and others in Uganda who when faced with serious illness have only a very immature and struggling health care system to turn to for help.