I am Edward Ebolias and this is my story; I am a parent to a thirteen year old boy with sickle cell disease. He was diagnosed with the condition at the age of seven months and since then we have been in and out of the hospital because his condition makes him very vulnerable to infection and malaria attacks. It was during these periods of health facility visits and admission that I got the vision of advocating for a special clinic set up at Atutur hospital to help those afflicted and affected by this condition.
So in April 2015, while admitted in Atutur hospital, I took the initiative and undertook the mission of setting up a clinic at Atutur hospital to assist persons with sickle cell disease. I shared my idea with Dr Sarah Asio a Medical Officer and she accepted to provide the technical support to the patients as doctor. This was what I had been longing for and I started the drive to have a sickle cell clinic started in Atutur hospital. I talked to the Hospital Administrator Mr Fredrick Malinga and the Medical Superintendent Dr.Oluka Simon about my proposal and they accepted. I then shared the same with the District Health Officer Kumi, the Chief Administrative Officer Kumi, and the chairperson of the hospital Board Mr Akonopesa Edward George who all supported the idea.
I, together with Dr Sarah then embarked on a registration exercise to ascertain the prevalence of sickle cell in the communities. We communicated to the public through churches, sub county administrations and public gatherings.
This resulted in very many people coming up and within two weeks we had registered over two hundred cases which was a big number given the catchment area. I then liaised with Dr Sarah, Fredrick Malinga and the Executive Director of the Sickle Cell Network Uganda Ms Evelyn Mwesigwa, whom I had earlier met at an ACCA continuous professional development workshop at Imperial Royale – Kampala, and we organized a meeting for the sufferers of sickle cell disease, their parents and care givers. The turn up was over whelming.
Ms Evelyn Mwesigwa came with her team from Sickle Cell Network Uganda and technicians from Central Public Health Laboratories (CPHL) to undertake screening and taking of blood samples for testing. That day 522 samples were taken, a health talk held to create awareness of the disease and registration done. We again arranged for another meeting in which more people turned up for screening. At this point the numbers we had realised made us set up a sickle cell clinic because there was overwhelming need for the service. We decided to create zones which combine two or more sub counties for each clinic day. The clinic is currently held every Tuesday of the week at Atutur hospital and so far five clinic days have taken place with over whelming turn up.
On average there are 4 cases of sickle cell patients who need transfusion each clinic day which is held weekly on Tuesdays, leave alone those that come for medical attention and need to be transfused on other non-clinic days who are also many given the lack of knowledge and awareness on home care and management of SCD.The clinic basically undertakes awareness creation and health talk, testing for malaria and testing the haemoglobin (Hb) levels for anaemia, treatment of those who are found to be sick, giving of prophylactic medicines like folic acid, antibiotics and fansidar to cover one month (which is the cycle for each zone).
During all the time so far the Atutur sickle cell clinic has been in existence, very many of the sickle cell patients have been found to have conditions that need blood and are prescribed for blood transfusion especially due to anaemia and severe persistent pains and this has saved many lives in most of the cases. This has been successful to the extent to which the Uganda transfusion service capacity could and is able to manage with the main support of the blood donors whom have given and continue to give blood.
Atutur hospital, despite the challenges, has and is providing hope to those sickle cell patients and their care givers who previously had nowhere to turn to when ever need for blood arose.
The sickle cell clinic at Atutur hospital is now one year and so many lives have been saved through blood transfusions.
There have been, notwithstanding, many challenges of blood donation especially when the school term ends because most of the blood donors are school children and also the blood bank is more than fifty kilometres from Atutur hospital making it difficult to access blood at all times an emergency arises. Inadequate storage for blood is also hampering the availability of blood in the hospital.