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Creating Awareness on the Importance of Knowing Your Genotype

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According to the Mayo Clinic, sickle cell anemia (SCD) is an inherited form of anemia which is a condition in which there are not enough healthy red blood cells to carry adequate oxygen throughout your body. Normal red blood cells are flexible and round, moving easily through your blood vessels, but in sickle cell anemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body. The sickle cell gene is passed from generation to generation in a pattern of inheritance called which means that both the mother and the father must pass on the defective form of the gene for a child to be affected. There's no cure for most people with sickle cell anemia, but treatments can relieve pain and help prevent problems associated with the disease.

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About 25% of adults throughout the country of Nigeria have the sickle cell trait according to PubMed. There is also a very high infant mortality due to infections that occurs especially in rural areas. d. But despite Nigeria being home to more people with sickle cell than any other country in the world, awareness is limited. Also according to PubMed, poor availability of resources to the public health and welfare sectors and economic inflation are severely reducing access to the appropriate medical and social services needed to treat this disease. This situation is frustrating to the families of a growing number of surviving patients in urban or middle to upper income groups in Nigeria.

Because of this issue, many YES Alumni have helped in varying projects to increase awareness about SCD. Bilyaminu Hassan (YES 2006-2007, hosted by IRIS in Cedar Rapids, IA) recently participated in a session to create more awareness about the disease at Basic Academy Schools in the Sokoto State of Nigeria. There Hassan and other volunteers carried out a session of informational facts about SCD to about 50 students between the ages of 12 and 16 years old. Some of the information was about the symptoms, how to care for the victims of the disease, available treatments and the importance of knowing what your genotype is so you know if you are a carrier of the disease. Hassan believes that all of the children now know more about the disease and will be more cautious and ready to use the advice given to them in their daily lives. 

“Now that they were told about the disease, and we all know how curious young people are nowadays, I am very sure that the children will be enquiring about the disease through other sources as well,” Hassan said.

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Three students who are also victims of the disease were in attendance and they shared their stories and experiences to their peers. One of the students shared about her dealings with the pains of the disease and how there was an instance where she had to be brought back home from school because she was unable to do so herself because of the pain. The student also expressed the importance of using the information they received that day and to find out their own genotypes. 

“If my parents had the chance to have the same information we have today, I wouldn’t have fallen victim of the sickle cell disease,” the student said.

Hassan has been invited to more schools to speak about SCD. He also hopes to have genotype testing kits at future events so they could carry out free genotype tests for the students.

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