The former Uganda Wildlife Authority (UWA) Executive Director Moses Wafula Mapesa is on August 11, 2015 traveling to Mayo Clinic-Arizona, US to have preliminary tests and assessments carried out before he undergoes a bone-marrow transplant in October this year.
Mapesa needs a bone marrow transplant as a result of Myelodysplastic Syndromes (MDS), a disease he has suffered from for eight years now. This is a disease that affects the bone marrow, making it incapable of manufacturing blood. In due course, a patient might require blood transfusion after a week of even days.
The length between the intervals Mapesa got blood transfusions gradually became shorter and shorter. Doctors then advised that he gets a bone marrow transplant. Until recently he had to travel to Kampala after every seven days to get new blood transfused into his system.
According to Dr. Henry Ddungu, a Hematologist and consultant at the Uganda Cancer Institute-Mulago, MDS are a group of cancers from the bone marrow where there is a problem with maturation of cells.
Dr Ddungu said since a patient suffers damage to their stem cells, as a result, what comes out would be inadequate. Normal blood is made up of three cells, red and white blood cells, and platelets. Dr Ddungu says that these cells have to mature in the bone marrow before blood is released into the body.
In MDS, the problem is within the bone marrow at the roots, which are also known as stem cells. Here the bone marrow fails in cell making, in other words; the bone marrow cannot manufacture its own blood.
Dr Ddungu says MDS can be described as primary or secondary. “Primary MDS is where you cannot identify the cause, while secondary MDS follows injury to the bone marrow,” he said.
Types of the disease
According to Dr Ddungu, MDS is classified depending on severity. There is refractory anemia, a condition where there are few red blood cells in the blood and the patient then develops anemia. Here, the number of white blood cells and platelets is normal.
Refractory anemia with ring sideroblasts is the second classification; where there are too few red blood cells in the blood and the patient develops anemia. The red blood cells also have too much iron but the number of white blood cells and platelets is normal.
The third category is refractory anemia with excess blasts: There are too few red blood cells in the blood and the patient has anemia. Here most of the cells in the bone marrow are blasts or immature cells. Here a patient is moving to stages of acquiring leukemia. The other classification where a patient actually goes into acute leukemia is acute myelogenous leukemia.
Risk factors are those things that make one susceptible to suffering from the disease. However, Dr Ddungu, who is the most senior doctor in treating MDS at the cancer institute, said the occurrence of the disease is not necessarily tagged to the presence of a risk factor.
“The injuries to the bone marrow that could cause MDS are caused by some cancer treatment like chemotherapy, exposure to pesticides and solvents like Benzene, and old age. Primarily, MDS is a disease for the elderly,” Dr Ddungu said.
Signs and symptoms of MDS
Ddungu said the commonest sign of MDS is fatigue because of decreased levels of red blood cells. Red blood cells help to carry oxygen and food, without which the body is weakened.
Sometimes patients have recurrent infections because their white blood cells are affected.
Patients also bleed, including spontaneous bleeding from any part of the body; including the skin.
How is MDS diagnosed?
According to Sam Mwandha, a member of Mapesa’s family, they first discovered that he had a problem with his blood in 2008. Mapesa had gone to South Africa for an operation when the doctors realized he did not have enough platelets to clot the blood.
MDS is diagnosed by specialists called Hematologists, who examine one’s blood to look out for abnormalities that might point towards damage in the marrow.
Treatment of MDS
Dr. Ddungu said there is no definitive treatment for MDS and that patients basically depend on supportive care.
“Because cells are low, sometimes we stimulate the bone marrow to produce more cells. The boosters are called growth factors and the most common form of supportive care is the use of blood products or rather blood transfusion,” Dr Ddungu said.
After the preliminary tests scheduled for August 11, 2015, Mapesa will travel back to USA in October for the transplant procedure and then stay there for a period of three months to one year under observation.
Dr Robert Nabanyumya, another relative of Mapesa, said the doctors recommended a trial drug to reduce on the intervals between which he requires a new blood transfusion while they wait for August.
And Dr Ddungu said that a number of medicines have been tried out around the world, including 5-Azacitidine, a drug which was recently approved by the Food and Drug Administration (FDA), in the USA but has not yet been registered or availed in Uganda because it is too expensive.
“As of now, the only potential cure is a bone marrow transplant from a related donor otherwise called an allogeneic donor. This donor might not be a relative, but as long as you have the same genetic makeup, they can work,” Dr Ddungu said.
However, such a service is not yet available in Uganda and Dr Ddungu said the Uganda Cancer Institute is planning to have it as one of the services offered in future. “We are putting in place all the necessary infrastructure so in the near future we also can start small cell services,” he said.
Chances of treatment success
Chances of recovery are not 100%. According to Ddungu, survival depends on factors such as if the transplant is not rejected, the level of the patient’s complications and whether the centre from where the transplant is to be carried out has the potential to take care of the patient.
“Bone marrow transplant has better chances and is still seen as the only potential cure of MDS,” said Dr Ddungu.
History of patients in Uganda
According to Dr Ddungu, they do not have a registry as yet but he has treated over 10 patients in the last three years.
Sadly, MDS cannot be prevented and has no vaccine.
However, Dr Ddungu said it can be detected early if a person goes for routine checkup. He said if a patient begins early treatment, the disease can be controlled.
“These are diseases that are not of public health concern but are really dangerous,” he says