sickle Cell patients cries out to govt

                                                              
Creating an aware for people living with sickle cell anemia. The term sickle cell disease (SCD) describes a
group of inherited red blood cell disorders. People with SCD have abnormal hemoglobin,
called hemoglobin S or sickle hemoglobin, in their red blood cells. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body. “Inherited” means that the disease is passed by genes from parents to their children. SCD is not contagious. A person cannot catc h it, like a cold or infection, from someone else. People who have SCD inherit two abnormal hemoglobin genes, one from each parent. In all forms of SCD, at least one of the two abnormal genes causes a person’s body to make hemoglobin S. When a person has two hemoglobin S genes, Hemoglobin SS, the disease is called sickle cell anemia . This is the
most common and often most severe kind of SCD.  Experiencing discrimination because of their
race or health condition can influence just how much trust people put into the health profession. In fact, having these experiences was associated with a 53-percent increase in the chances that someone suffering from sickle cell disease will not follow their doctors' orders.  Study reviews  the experiences of how patients who suffer from this debilitating genetic disorder experience the healthcare system. Sickle cell disease is a serious debilitating disorder that affects both a person's body and psyche. People who suffer from this hereditary condition experience acute and chronic pain, and are more susceptible to infections, strokes
and neurological problems. As patients grow older, they also experience more organ- and
tissue-related problems. To ensure patients enjoy a better quality of life, those suffering from the disease should be able and willing to adhere to the small handful of medication and treatment options available to
them. However, many reports show that such patients often do not do so.  About 58 percent of the
non-adherent group, compared to 43 percent of the adherent group, had at least one experience
of being discriminated against based on their race or health status. The researchers also found that people who had previously experienced discrimination were 53 percent more likely to not always stick to their
physician's recommendations. The findings are consistent with previous studies among other chronically ill patient groups. These also show how discrimination affects a patient's trust in the healthcare system, and the person's subsequentwillingness to follow prescribed treatment regimens. The perceptions and experiences of being discriminated against may increase the chances of sickle cell patients not fully benefiting from the health care that is available to them. "A good relationship between the patient and provider can facilitate adherence, while a problematic relationship can negatively impact patient adherence," "Improving relationships between healthcare providers and such patients may improve their trust in medical professionals, which in turn may
improve other outcomes among this underserved patient population."   In order to create an awareness for people living with sickle cell anemia in Anambra, No fewer than 200persons joined Anambra Broad Casting Station (ABS) “Walk to Life’’ in honour of sickle cell disorder patients. The Walk to life was orgainsed by ABS management in collaboration with National Association of People Living with Sickle Cell Disorder in Anambra, which started from itspremises through the major streets of Awka. The National Coordinator of the association, Mrs Aisha Edward called for a probe into millions of naira donated to the association
through different organisations, saying, ``because it is doubtful if such monies were not diverted.’’ Edwards said that the association was at a loss on how the millions of naira that was donated by the Federal Government, other individuals and corporate bodies to the Sickle Cell Day Foundation were put to use. She lamented that rather than promote the course of people living with Sickle Cell disorder, people were busy feasting on their plight and vowed that the victims themselves would begin to fight for their course.
``Members of my group have been exploited by healthy people who do not suffer from sickle cell and that must stop,” she said. She praised event sponsors, particularly ABS and its Managing Director, Mr Uche Nworah, Anambra State Government, Chairman of Fresh Life Water, Mr Godwin Ezeemo, FRSC, Red
Cross and House Committee Chairman on Health in the state House of Assembly, Mr Obinna Emenaka. She warned people living with the disorder not to be deceived by conmen who claimed cure of the disorder through unorthodox means. She also warned young people to stop blind love, but to check their genotype status before getting married. Anambra State Commissioner for Health, Dr Joe Akabuike said that Sickle Cell was easy to prevent if only people could undertake simple laboratory test to ascertain their genotype
status. He said that the walk was one of a series meant to encourage sickle cell carriers that they could manage the disease and live healthy lives, and to ensure that Anambra was free
from the disease. Nworah said that the walk was an advocacy to inform the people of Anambra state about the disorder, as the roles of the media ``is to inform, entertain and educate’’. Ezeemo said that the company sponsored the walk because of its strong belief in the need to create massive awareness of the preventable disorder and called on parents to always guide their children and wards properly ``before it is
late’’. He described the walk as positive action which would match the publicity that had accompanied the awareness creation of the disorder, while urging people living with it not to feel inferior to those living without it. “After all, in every disability there is an ability,” he said. The Chairman of the Committee on Health,
Emenaka (Anambra West APGA) , who is a pharmacist, also blamed the widespread of sickle cell disorder to lack of information and lamented that some people still did not know their genotypes.