Report on 2016 study of Sickle Cell Anemia

The last study of sickle cell anemia was more than 50 years ago. The study in the video below is an important update on the changing numbers of those with sickle cell anemia in Uganda. NTV Uganda describes the video as:

A new study shows that seven out of every 150 children in Uganda have sickle-cell disease, and that in every 100 children, 13 have the sickle-cell trait. These are some of the findings presented at the Uganda Sickle Surveillance study, disseminated today by the department of Pediatric and child health Makerere University college of Health Science working with Ministry of health.

Sickle Cell Disease in Uganda

Sickle cell disease (SCD) is a common problem in tropical parts of the world that have malaria. It is a genetic trait that confers advantage to those that have one gene affected making malaria attacks are less severe. When both partners have a single gene affected, they may give birth to a child with SCD. Migration of people affected by SCD has meant that the disease has become more common in Europe and America. Wikipedia continues stating that SCD

is a group of genetically passed down blood disorders. The most common type is known as sickle-cell anaemia (SCA). It results in an abnormality in the oxygen-carrying protein haemoglobin found in red blood cells.

SCD symptoms include episodes that are painful which might cause a sufferer to become bedridden, hospitalized, anemic, short of breath, and vision impaired. They can include jaundice, stunted/delayed growth, chest pains and headaches. Also lack of oxygen from the abnormal red blood cells can cause damage to other body organs and functions. Severity of symptoms varies greatly as does the amount of disability (see Can I Work With Sickle Cell Disease?)

SCD can lead to various chronic and acute complications, several of these have a high mortality. 

A 1984 report Sickle cell disease in Uganda: A time for action found that in a population of 25,000,000 it could be expected that 25,000 babies would be born with the condition each year. This would mean that in a population of 5,625,000 disabled (see Number of Persons With Disabilities (PWDs) in Uganda), estimated from 2014 census, it could be expected that substantially more than 5,625 babies would be born each year with SCD to PWDs.

Prevalence of sickle cell trait in 112 districts in Uganda Prevalence ranged from 2·5% to 23·9%

In May 2016 the 6th International Symposium on SCD in Central Africa (also known as REDAC from the French name Réseau d’Etudes de la Drépanocytose en Afrique Centrale) was held. A report Burden of sickle cell trait and disease in the Uganda Sickle Surveillance Study (US3): a cross-sectional study in Uganda found:

Prevalence was highest in the Mid Northern and East Central regions. Overall, the prevalence of sickle cell trait was 13⋅3%, but it was more than 20% in eight districts. Among babies aged 6 months or younger, the overall prevalence of sickle cell trait was 13·2% and of disease was 0·8%, which suggests that at least 15 000 babies per year are born with sickle cell disease in Uganda.

The report also noted that 

Age and HIV (human immunodeficiency virus) status also seemed to be associated with early mortality in children with sickle cell disease, as we took reduced prevalence of sickle cell disease in children older than 12 months and those who were HIV positive to indicate early mortality.

Further research in this area is clearly needed.

The Sickle Cell Association of Uganda says "Sickle cell does not belong in the closet!":

One of the greatest Ugandans who ever lived was Philly Bongoley Lutaya who in his own words gave Aids “a face". Taking on his philosophy is Ruth Nankanja a sickle cell patient.
Ruth soon realized that people would rather sweep sickle cell under the carpet and forget about it... she knew only too well the stigma and discrimination faced by people with sickle cell in Uganda.
Yet once armed with scientific fact as to the cause of sickle cell disease, Ruth Nankanja committed herself, a number of other patients together with several health workers in order to change this state of affairs.
Sickle Cell Association of Uganda is now the only grass roots organisation representing the interests of patients in Uganda. We strive to change the perception that the majority of the population has in Uganda about the disease - that those who have this disease are worthless people in society, worth stigmatising and discriminating against. Through counselling and education we strive to improve the lives of these families.

The Sickle Cell Association of Uganda concludes:

The only Sickle cell Clinic is in Mulago Hospital yet Sickle cell disease is widely spread throughout the whole country. Awareness is still low because the Sickle cell Association of Uganda, which is carrying out this activity, has limited funding and only manages to reach out to few communities. However, Sickle cell is a forgotten enemy which desperately needs to be addressed.

Once again PWDs carry a significantly greater burden because of feelings of worthlessness, stigmatization and discrimination associated with SCD. This will be intensified by the stigmatization and prejudice PWDs already have to face.