SYNAGOGUE: A CHALLENGE IN SICKLE CELL PREVENTION AND MANAGEMENT.

On Monday a colleague of mine in advocacy shared an article which was published in The Daily Monitor last year in the Heart to Heart Magazine. It was about a lady who was in 3 years of relationship and found out that she and her boyfriend are sickle cell carriers. This means they have higher chances of giving birth to a child with sickle cell disease. She was seeking for advice on whether to proceed with the marriage when they are at risk of having babies with sickle cell.

One advisor who called himself Pastor Allan advised like

“Dear Vanessa, as an anointed man of God, I speak complete healing in your situations. May God intervene by healing both of you. None of your children shall have sickle cells in Jesus’ mighty name, Amen! …..Change your attitude. Expect that things will be well and life will be great no matter what doctors say. … If you can, pray about your situation and always go for medical checkups to re examine yourself. One day, the same doctor will say you are perfectly healed.”

Many people give advice on the topic they are 100% ignorant about. I don’t think if you are a man of God that you hold all the wisdom.

Many people think that with prayers and spiritual beliefs one can get cured of sickle cell. The only cure for sickle cell disease available is a bone marrow transplant. I don’t know what is wrong with people, someone who believe in God’s creation become blinded and think that when you are cured through the process of bone marrow transplant it’s not God’s work.

Yesterday I was in hospital waiting to see a chiropractor. While waiting for my turn I got into discussion with another patient about sickle cell disease. Because I started this program of Each one teach one and reach one about sickle cell disease it was my perfect time. She told of her two cousins who have sickle cell disease. I opened up about my condition and she told me I should go and see a pastor to help with my condition. She told me this man of God can take away my pain and she has also seen many people with different illnesses including her son who have been cured.

She told me her son was healed but during this healing process they never stopped giving him the medication the doctor had given them. COMMON SENSE

I was still wondering why a person who knows someone who cures each and every illness can come to a hospital.

FOR SICKLE CELL CAUSE

This Saturday 9th May TEDxKiraTown has organized TEDx event “The Future is today” at Serena Hotel. The event shall feature a number of speakers including Bonita Nanziri, Robert Kabushenga, Peter Kimbowa-PK, Maurice Mugisha, Ethani Mussolini. 
Bonita Beatrice Co-Founder of AfriGal Tech will be sharing about how we can use mobile phones to Diagnose Sickle cells Anemia. 
Entrance fee is 
20,000 for student and 
45,000 Early Bird
60,000 Standard

SICKLE CELL SCREENING CAN SAVE US FROM A RARE CANCER

In October last year, 23 years Shawniece Wilmore was diagnosed with renal medullar carcinoma a rare and aggressive kidney cancer that is linked to people with sickle cell trait and disease.  Her cancer was diagnosed when it was at stage four. Unfortunately on 16^th December Shawniece passed away three days from her scheduled graduation from Jackson State University.

Another young man is in the news for the same cancer, Ty Patterson a basketball player for the Danville Riverhawks has been diagnosed with renal medullary carcinoma cancer at stage 4.
Being a rare cancer some people are not bothered about. The claim is since its rare “I will not get or someone I know will not get it”. But when a rare cancer gets to someone we know that’s when we wake up and realize that anyone is at risk.

When the news of the sickness of Rose Mary Nankabirwa a former news anchor with NTV spread through both the mainstream and social media the whole country was paralyzed. Rose Mary died from another rare and aggressive kidney cancer, adrenal cortical carcinoma. During Rose Mary’s sickness and after her death there has been a call for everyone to test and find out their status about cancer.

Shawniece’s family appeal to the public was for everybody carrying a sickle cell trait to be aware of this cancer that only affect people with sickle cell trait and disease. Like Shawniece, I also never thought that just having sickle cell trait would cause cancer. When I heard of this story I went and consulted my physician who told that he has handled a number of people with renal medullary carcinoma.

The only way we can find out that we are at risk of some cancers which are related to certain conditions is testing and being aware about the underlying condition. You can’t know that you are at a risk of getting renal medullary carcinoma when you have not tested and become aware whether you have the sickle cell trait.

 Sickle cell trait means having one gene for a condition called sickle cell disease (SCD). This in itself does not normally cause problems and sickle cell trait is not considered as a disease. Since sickle cell trait does not normally present complication many people who have the trait do not know until they give birth to a child with sickle cell disease.
 Sickle cell disease is a serious condition which is inherited (genetic). It affects the red blood cells in the blood. With sickle cell disease, the red blood cells have a tendency to go out of shape and become sickle-shaped like a farm tool that cuts grass - instead of their normal doughnut/disc shape. This can cause various problems such as episodes of pain, infections and various complications. There is a big part of our populations who have the sickle cell trait unknowingly. Uganda is on time bomb for a number of health issue related to the gene including giving birth to children with sickle cell disease.

According to a survey that was released by Ministry of Health, Cincinnati Hospital USA and Makerere University on 16^th April showed that 13.1 % of children carry sickle cell gene. This was done for a period of one year sampling over 90,000 children below 2 years. This means 1 in every 7 children have the sickle cell trait.

49 of the 112 district of Uganda have sickle cell trait of 15% and above. It was also noted that 8 districts have sickle cell trait prevalence above 20%. These districts include Bundibugyo, Bulisa, Alebtong, Jinja, Tororo, Gulu, Lira.

With that number, there is a call for a comprehensive national intervention. It’s estimated that if no intervention is done by the year 2040 the number of people with sickle cell disease is going to triple. If 4 in 150 children have the disease what will happen? If 33,000 babies are born every year in Uganda and 70-80% do not make 5 years what will happen in 2040?

Comprehensive awareness programs should be introduced with a nationwide coverage. There is also a need for premarital counseling and testing and genetic screening for all people. Appropriate genetic screening could lower the rates of disease and/or equip families with knowledge about their chances of passing the disease to future generations.