GENETIC and NEWBORN SCREENING is Critical (A PATIENT'S VOICE)

By Kadie Deen


Statistics show that 400,000 babies are born annually worldwide with sickle cell anaemia disease. According to research, cases of sickle cell are expected to increase by 30% worldwide by 2050, most of them in Africa. The majority of children with sickle cell disease die before their 5th birthday.


Sickle cell is a genetic blood disorder that mutates the haemoglobin and distorts the red blood cells into a sickle shape. The haemoglobin is the red protein molecule responsible for carrying oxygen from the lungs to the body's tissues and organs throughout the body and transports carbon dioxide from the organs and tissues back to the lungs.


Sickle cell anaemia is a debilitating condition and can cause severe pain, known as a crisis. Life-threatening infections, haemolysis, stroke, pulmonary hypertension, fatigue, jaundice, pneumococcal infection, acute chest syndrome, sepsis, loss of vision, necrosis, priapism, leg ulcers, gallstones, splenic sequestration, Dactylitis and delayed growth are some of the complications of sickle cell disease.


My name is Kadie Deen, 51 years old and a sickle cell survivor. I am a mother of a teenage boy named Elijah, an international advocate and the founder of Sickle Smart Foundation. I was born in Sierra Leone at a time when there wasn't much awareness about sickle cell. I was diagnosed at a very early age when I was few months old. I grew up a very sick child and was at death's door a few times. Final- ly, the doctors gave up on me. My parents were told there was nothing more they could do for me. So I was sent home to die. I missed more than a year of school. I went blind for few months, and all hope was lost, but GOD is faithful. He had a plan and purpose for my life.


Despite me having a severe form of the disease (HBSS) and all the challenges I encountered, I have evolved and don't let my condition hinder me or get in the way of achieving my goals and dreams. I am passionate about raising awareness and helping people with sickle cell lack access to adequate medical treatment.


I have been working tirelessly in Sierra Leone since 2011 to raise awareness, advocate, and educate people about the disease. I record my monthly blood exchange transfusion treatment and post it on my sickle smart Facebook page so people can have an idea and see first-hand what I have to go through to keep healthy and out of the hospital.

KNOW YOUR GENOTYPE CAMPAIGN is one of the initiatives I use to raise awareness. For example, in 2019, Sickle Smart Foundation teamed up with Dr Cheedy Jaja, a professor at the University of South Carolina, USA, for world sickle cell day.


Dr Jaja donated a rapid point of care test kit called SickleScan, which was used to do the free screening for people to know their genotype. This event took place in 3 locations in Freetown. We screened people in the peninsular community, staff at the AYV television and radio broadcasting station and the Ola During Children's Hospital.


Genetic screening in Newborn is critical as it helps identify babies carrying the gene (sickle cell trait AS) and those with the disease (SS and SC). Sickle cell disease is a primary cause of the high infant mortality rate in Sierra Leone, but it doesn't have to be so. Early intervention and the correct treatment of prophylaxis and folic acid can help save lives.

Unfortunately, there are no newborn screening programs n Sierra Leone. However, the country continues to strengthen its health care services from the challenges of 11 years of civil war and Ebola.


The pilot scheme for newborn screening with Dr Jaja is making a difference and impact. My goal is to inspire, encourage and prevent babies from being born with sickle cell. Know your genotype campaign can help couples and young adults to make an informed decision. I believe in prevention.


We have a sickle cell support group on FB and WhatsApp. These support groups have changed lives and massively impacted people. People who were previously ashamed and stigmatised are now confident and embrace that sickle cell is not a shameful disease.


My long-term goal is to establish a wellness clinic for sickle cell children in Freetown, Bo and Kenema. Together we can make a difference.


Find out more about my organisation at www.sicklesmart.org

email info@sicklesmart.org

Kadie Deen

CEO/ Founder of Sickle Smart

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