SICKLE CELL: WE SHOULD STOP LIVING IN DENIAL

Yesterday I was seated at my physician's clinic waiting to see him this time not for treatment but for a friendly chat. A lady came out of the treatment room in a lot of pain and came where i was seated with an old woman. Her body signaled that she wanted to sit there yet her mother was asking her to go and sit in the car as they waited for the prescription. I gave her space to sit but she was in too much pain. She still had the energy to greet us but the words were not clear.

She was having pain in the arms and neck. I did not ask her anything because she could not talk. But with the pain she was in and her ability to greet us I just thought that she a sickle cell warrior.

Minutes after her departure a nurse asked me whether I had seen her, I told her she was seated next to me. She told me the lady is also a sickle cell warrior and had her wedding lately and now a mother.

The same nurse narrated to me the story of her neighbor who has 15 years old boy sickler (first born). She gave birth to the second born and was free from sickle cell disease. The last born now is 7 years old and also a sickler.

The lady refused to accept that her other child has sickle cell disease. When this nurse asked hen she denied. The lady has trekked a number of hospitals repeating the same test and praying that her last born at least be carrier but all the signs the boy has are of a sickler. But all the test come out showing the child with sickle cell disease

It has taken her a number of years and several tests in different hospitals and laboratories to at least now accept that her child has sickle cell disease.

Many people are still living in denial. More awareness and sensitization about sickle cell disease is still needed. Each one should teach one.

A sickle cell free generation is possible and it begins with you.
#besickleaware

LAUNCH OF THE NATIONAL NEONATAL SICKLE CELL SCREENING

World Health Organization (WHO) estimates that over 250,000 babies are born with sickle cell disease (SCD) annually in Sub-Saharan Africa, and only 10% -50% of them survive beyond five years of age. Data describing the magnitude of the sickle cell problem are lacking in most African countries. The available data on the prevalance were mainly from older studies and small numbers of hospitalized patients. In Uganda, approximately 25,00 children are born with sickle cell disease every year, but unfortunately 70-80% die before their 5th birthday. There is no newborn screening program in the country, and children are often diagnosed late after development of a crisis. With lack of a screening program, diagnosis is usually made late and many children die before they are diagnosed.

In February 2014, the Ministry of Health working in collaboration with Cincinnati Children's Hospital based in USA, Makerere University and Sickle Cell Association of Uganda launched a sickle cell survey with the objective of establishing the prevalence and mapping out the entire country. The screening was conducted at Central Public Health Labaratories (CPHL). The survey ended on 31st March 2015. About 100,000 infants from all districts in the country were reached. Data analysis is now complete and the information generated from this survey has given us a clear picture of the prevalance of sickle cell trait and disease across all districts of Uganda. This information will enable the Ministry of Health with its partners, to develop interventions to combat and control the sickle cell burden in the country.

The Ministry of Health with its partners are planning to disseminate results of this survey and launch routine neonatal sickle cell screening in all high burden districts in Uganda. The function will be conducted on the 16th of April 2015 at Makerere University Freedom Square from 11:00 am to 4:00 pm. Besides the launch of the neonatal screening program, there will be free screening for whoever will wish to be tested at the launch site. 
  #April16   #besickleaware