In Senegal, the incidence of sickle cell disease is about 10%, of which 1% are patients who develop a severe form of the disease. Sickle cell disease is a chronic, disabling and costly hereditary condition that sometimes causes family drama. Therefore screening or even a prenatal assessment is needed to avoid or reduce the risk of pregnancy in children with sickle cell disease “SS”.
There are some people who are sometimes blinded in love from their first meeting. They get married quickly to have children. Most of them do it without knowing their HIV status. Unfortunately, children with sickle cell disease can be born from these unions, some of whom may even develop a severe form of the disease. They are “SS” subjects, as we say in Medical Jargon, who have inherited pain only from their parents! Children of two sickle cell parents who in turn develop a severe form of the disease.
This chronic pathology requires very long therapeutic education. Sickle cell disease, the most widespread genetic pathology in the world, affecting more than 150 million people, is still largely unknown to the population. Africa is particularly susceptible to this hereditary, chronic and debilitating disease. In Senegal, we often fight alone with this silent killer that destroys families. “This disease causes financial, physical and mental distress. It is a very painful disease that requires a consistent approach, ”explained the president of the Sickle Cell Patients Association. Maguèye Ndiaye requests above all for the availability of decentralized units in our country. “We can’t think of leaving Kedugu for advice. There are not enough experts for the disease discovered for more than a century. But so far, there has been no concurrence in Senegal, ”he said. Patients with this disease and parents of children have sought a therapeutic subsidy because treatment is long and expensive. Maguèye Ndiaye, who has been advocating for more than a decade, called for the creation of a center or decentralized unit dedicated to the disease.
“A painful, costly and devastating disease”
“Care is almost non-existent, and since the first case was discovered in Senegal, patients continue to have the same concerns. Whether in the case of children or adults. It is very difficult to live with sickle cell disease. It is expensive and there is not enough support on which the patient can count from the state. We need the right infrastructure. It is inconceivable that patients from the most remote areas come to call for advice. Patients do not experience any reduction in the cost of medicines, hospitalization and consultation tickets which will be made possible by state subsidies. We may not get it completely free, but we are requesting to reduce the cost of care, especially counseling and hospitalization which is almost out of reach. I urge the authorities to pay more attention to this disease which is causing massive deaths, which is devastating …
There are concrete arrangements that can help the patient to live better with his illness. There are no real statistics of this disease in the country. We sometimes have statistics at the consultation site level. But at the national level, this is a census that a long time ago and which reported an estimated spread rate of between 8 and 10%. With the evolution of the disease, we know that we make up more than 10% of the population. But we need real and concrete studies to know the exact number of people affected by this disease, ”he said. According to Maguèye Ndiaye, this subsidy is one of the concerns of patients and parents of children with sickle cell disease, who want therapeutic assistance from the state, because treatment is long and expensive. According to the Sickle Cell Disease Control Association, the disease is plaguing Senegal. He warns and asks for more support. However, therapeutic advances have increased the life expectancy of patients. But there are still many challenges.
In Senegal, according to Dr. Indou Dème Ly, coordinator of Usaid, there is no control program or subsidy for the disease, which has become a real public health problem with an outbreak of about 10%. “Gene prevalence in Senegal is about 10%. This has been confirmed by neonatal screening statistics considering Professor Diagon’s research in St. Louis. Since 2017, he has conducted a consultation with neonatal screening and the same figure comes back and is close to 10%”, the practitioner said. An assessment confirmed by the director of the National Center for Blood Transfusion (Cnts). “It must be said that 10% of the population has genes in their blood, of which 1% develop a severe form of the disease,” The director of Blood Transfusion (CNTS), Prof. Salio Diop, said the disease was “painful and very expensive. Patients sometimes pay up to 500,000 francs a year for treatment.” Equal opportunity card for, if not free.We want to turn sickle cell disease into a social disorder so that all patients have access to treatment.This is a very difficult genetic disease treatment. We do not treat it to make it disappear, but it is a significant treatment for anemia, osteoporosis, and infections, ”explains Prof. Salio Diop.
The director of Cnts noted that “bone marrow transplantation is a strategy that is practiced in some developed countries but is still not accessible in Senegal due to its cost. As well as gene therapy.” “The computerized medical file will make it possible to survive with the disease almost everywhere and get adequate care in real time,” Albert Ryer, director of Children’s Hospital, pointed out in the 2020 edition of the day ৃত dedicated to the disease worldwide ৷ that two incompatible people. Prevention through marriage requires medical examination before marriage.
Health experts are adamant: “In 2022, premarital tests should be made mandatory because it is very difficult to manage SS children psychologically and financially. A prenatal assessment with a test should be mandatory to find out if you have sickle cell disease. Screening to avoid reunion between two sick people. When the disease is diagnosed, management is easy. ” Moreover, every June 19 is World Day dedicated to Sickle Cell Disease. A day founded by the World Health Organization (WHO) to raise family awareness on birth control in children with sickle cell disease.