FROM SICKLE CELL PATIENT TO SICKLE CELL WARRIOR
Eunice Achieng Owino was born in Dar es salaam, Tanzania. She is the fourth child in a family of five children. Eunice was diagnosed with Sickle Cell at 8 months which made growing up very difficult as she spent half of her life in and out of hospital. She is fortunate to have had a loving, caring and supportive family that stood with her all the way.
When she turned 13 years she began to understand her condition that is, Sickle Cell Disease. She also began being able to take care of herself and manage the disease by keeping warm during cold seasons, drinking water, eating vegetables, fruits, taking medication at the right time and going for my regular checkups after every three months. This is how she has managed to live with Sickle Cell till today.
“I live my life as normal as any other person. I lost my father when I was 19 years old and most people thought I would get very sick, but I thank God I never had any crisis at that time”, she says. Sickle Cell patients sometimes get into what they call a crisis. In Eunice’s case, she had one in 2007 that has affected her to date. She began feeling pain in the hip joint which was on and off from 2003. She then decided to go for check-up and was found to have a crack on the hip joint. To reduce or stop the pain and maintain joint mobility she would elevate and rest the joint, go for physical therapy, take pain relief medicine. She however had to go for a total hip replacement surgery in 2014 which was caused by a lack of oxygen in the hip joint called Avascular Necrosis (AVN). Avascular necrosis (aseptic bone necrosis) of the hip and other major joints may occur because of ischemia (a restriction in blood supply to tissues, causing a shortage of oxygen that is needed for cellular metabolism). As a result of the surgery she walks with a slight limp.
“My experience as a person living with Sickle Cell led me to become a Sickle Cell Warrior and a voice for the Sickle Cell Community. Together with other patients, we have formed the Sickle Cell Warriors Association which seeks to advocate and raise awareness of the disease in Tanzania by educating the public on the disease and how patients can find sustainable medical care. We have done sensitization in a few counties and we hope to reach the entire country,” she says.
The counties that are most affected by the disease are – Dar es salaam, Kisumu, Siaya, Homa Bay, Migori, Kakamega, Bungoma, Busia, Vihiga, Kisii, Nyamira, Mombasa, Kwale, Kilifi, Lamu, Taita Taveta, Trans Nzoia, Uasin Gishu, Nandi, Nakuru and Tana River
SICKLE CELL GENE
WHAT IS SICKLE CELL DISEASE?
Sickle Cell Disease (SCD) is a group of inherited Red Blood Cell disorders that take their name from the irregular sickle shape of red blood cells in individuals with the disease. Healthy red blood cells are round, which makes them easy to move through small blood vessels, carrying oxygen throughout the body but in individuals with the disease, the sickle shape prevents the cells from carrying out their function. Sickle cells become hard and sticky, getting stuck in small blood vessels and blocking the flow of blood and oxygen to organs in the body. This causes repeated episodes of severe pain, organ damage, serious infections or even stroke. Sickle cells also die early, resulting in a constant shortage of red blood cells hence Anemia.
Sickle-cell conditions have an autosomal recessive pattern of inheritance from parents. The types of haemoglobin a person makes in the red blood cells depend on what haemoglobin genes are inherited from his or her parents. If one parent has sickle cell anemia and the other has Sickle Cell Trait, then the child has a 50% chance of having sickle-cell disease and a 50% chance of having sickle-cell trait. When both parents have sickle-cell trait, a child has a 25% chance of sickle-cell disease, 25% do not carry any sickle-cell alleles, and 50% have the heterozygous condition
MANAGEMENT OF SICKLE CELL DISEASE
People living with SCD especially need education and counselling to accept their condition and the knowledge to know that it is not ‘cured’. Hence lifelong medical care is needed to manage the condition. Management usually includes; ensuring one takes plenty of fluids, keeping warm during cold weather, exercising within one’s tolerance, and use of painkillers when needed. It is also imperative that one maintains their general health through prevention and treatment of infections, regular use of preventive medicines such as of malaria, and use of blood builders and transfusions when needed.
Affected families should also receive counselling because more often than not, there is conflict brought about by blames especially it is a genetic condition.
Medication available today is Hydroxyurea which has been used to manage the condition for more than two decades. In 2017, the US Food and Drug Administration (FDA) approved a new drug, Endari (also called L-glutamine oral powder), to help reduce complication brought about by the condition. Patients can seek the counsel of a doctor to get the prescription for the two drugs.
We only hope that current ongoing research into developing stem cell transplantation techniques which are expected to offer a chance for cure will bear fruits soon. Until then, raising awareness is a step towards better health since knowledge imparted will help in better management.