I am Edward Ebolias and this is my story; I am a parent to a twelve year old boy (Odeke Aaron) with sickle cell disease. He was diagnosed with the condition at the age of seven months and I happened not to know what to do in relation to sickle cell disease. He started being very sickly and the hospital visits increased.

Notably one time he was taken ill at the age of two years. I was referred to Mbale regional hospital and upon reaching there found a very long queue in the acute ward and I remained there helpless, then with the grace of God the Doctor on duty walks in and asks for my book for prescription and he immediately wrote and marked the prescription with an X. I was admitted into the acute ward where I was told there was no blood which Aaron was urgently in need of. However, due to the limited staff and the overwhelming numbers, I was requested to check whether blood had been delivered to the blood bank, which happened to be in the hospital. I eventually ran to the blood bank and found them just delivering blood. So I hurried back to the ward and a nurse was sent to collect blood immediately and in the meantime the transfusion line was being placed. All the beds in the ward happened to be fully occupied as well as the stands for the fluids so I had to hold up the blood bottle for all the time the transfusion was taking place.

That day I remember well was a Saturday and the transfusion went on into the night time. Due to the high demand the blood got finished from the blood bank by around midnight and some lives were lost in the due course. In the morning, Aaron’s condition still needed more blood and because I was around in the night when the blood got finished I became desperate but was once more told to go to find out if there was any blood in the blood bank. To my surprise I got blood being offloaded and I returned immediately to tell the nurse on duty who went and collected blood and Aaron was transfused again on Sunday around 11.00 am. All that time I had been standing with nowhere to even to sit and again I had to hold the stand till the blood got finished.

That transfusion was the beginning of many more to follow in basically many hospitals I visited. All in all Aaron has had more than twenty transfusions in his thirteen years of life. At one time he got a stroke which paralyzed his right leg from the ankle downwards because I was ignorant about the effects of sickle cell disease and I did not know what to do in case of any disease attack. This increased the urgency with which Aaron needed blood every time he fell ill so as to avoid another stroke. Blood was always needed whenever his hb went low and even at times when he was in persistent pain that was not going away he had to be transfused.

Blood has really become Aaron’s life saver and I would like to appreciate, from the bottom of my heart, all those good Samaritans who have continually donated blood to save lives of those in need. I pray that those good people continue supporting blood donation because there are very many people out there who need blood to survive. I also want to highly appreciate those persons who manage the blood at the blood bank and in the hospitals for the great work they are doing to ensure that blood reaches those in need with ease.

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.