Mulago doctors and lecturers from Makerere University could not hold back their tears as sickle cell patients and parents shared their experiences with the disease.

Sickle cell disease (SCD) is an inherited blood disorder that causes sickle-shaped red blood cells. These sometimes stick together, blocking blood flow and oxygen from reaching all parts of the body.

Living with SCD presents a lifelong battle against chronic pain, anemia, organ damage, and a range of complications.

Some of the participates of the Sickle cell Conference at Makerere University on November 28, 2023.

During a sickle cell disease stakeholders engagement at Makerere University, sickle cell Disease (SCD) warriors and advocates called for an urgent need for increased awareness and support.

“We must intensify efforts to educate communities about the disease, Most of us have graduated from Universities, but the moment employers get to know that we have the disease, they tend to ignore us. I am not in formal employment because people do not want to employ me,” Felix Luswata, told doctors and lecturers.

Luswata said that he is lucky that his mother is still living and able to provide for him otherwise it would have been difficult for him to survive.

Dr Lisa Nansubuga, an intern doctor at Mulago Hospital said that she is trying to live a normal life, but sometimes it is difficult to push on to the following day when she sees her friends dying at an early age.

“Living with sickle cell is a difficult and sad journey. When I heard that one of the young doctors had passed on, I wanted to drop medicine because I also thought I was going to die. I have a confectionery business but sometimes I wonder why I am pushing myself to work yet I am dying soon. Every single day I lose hope when I see young people dying,” Dr Nansubuga said.

Dr Nansubuga noted the public should be sensitive when making comments about people living with sickle cells.

“People do not know that even the smallest comment can throw you into depression. Comments like you look thin, why are your eyes yellow or why are you always falling sick are stressing. As patients we deal with a lot,” Dr Nansubuga said.

She called upon all youth living with the disease to accept their condition and communicate effectively their weakness to people around them.

Emmanuel Majala, a 62-year-old said that the irregular supply of the wonder pill known as hydroxyurea in the country has brought misery to him and other patients.

Hydroxyurea, is a medication that plays a crucial role in preventing painful episodes of SCD and reducing the need for blood transfusions among patients with sickle cell anaemia, although it does not offer a cure for the disease.

It promotes the production of normal blood cells, alleviating blockages caused by the abnormal shape of red blood cells in SCD.

“Hydroxyurea is a wonder pill but sometimes we have to go out of our way to purchase these drugs in private pharmacies at a very high cost, the drug also has side effects when I take it. I have to take a lot of water, so for a person who cannot afford a bottle of water at sh1000 it is expensive,” Majala said.

Evelyn Mwesigwa, a parent of a sickle cell child said that she ran out of words when her son started praying to God not to heal him but to take his life because of too much pain.

“When you are told that your child has sickle cells, it is like being dropped in an ocean you do not know how to start, how to swim, when to end and who to swim with,” Mwesigwa said.