In a world where the next best buddy is the multifaceted crisis, and multi arms awakened always to the everyday excruciating pains that even the world’s own very best are yet to find lasting solutions, the thoughts of the patients easily discerned, “the world is gradually closing in”.
These thoughts are often present in the circle of these very special people. From childhood and unto adulthood they are seen spending better parts of their lives in and out of hospitals with very few living normal lives.
Sickle-cell disease (SCD), also known as sickle-cell anemia (SCA) and drepanocytosis, is a hereditary blood disorder, characterized by an abnormality in the oxygen-carrying hemoglobin molecule in red blood cells. This leads to a propensity for the cells to assume an abnormal, rigid, sickle-like shape under certain circumstances. Sickle-cell disease is associated with a number of acute and chronic health problems, such as severe infections, attacks of severe pain (“sickle-cell crisis”), and stroke, and there is an increased risk of death.
Sickle-cell disease occurs when a person inherits two abnormal copies of the hemoglobin gene, one from each parent. Several subtypes exist, depending on the exact mutation in each hemoglobin gene. A person with a single abnormal copy does not experience symptoms and is said to have sickle cell trait
Recognizing all these existing painful facts willed Miss Oluwatoyin Adesola even stronger and more resolute in her call to serve the sickle cell patients.
“You may have a sickle cell but sickle cell should not have you”. This motivating statement Miss Oluwatoyin Adesola a sickle cell advocate, a motivational speaker and an author who is fondly referred to as STILL STANDING utter always to allay her fear and reassure herself of life in abundance. She further voiced that “my greatest fear was that I would just die without achieving anything…”
Today, Miss Adesola’s decision to confront her deepest fear and who is also intensely passionate about absolute health care delivery went ahead to establish her foundation stating the need for accurate information, diagnosis et all for sickle cell patients. She further explained that doctors are increasingly finding it difficult prescribing the right medications due to different cases of crises of patients.
The crux of the matter according to Miss Adesola is that patients need to be well informed about their drugs, food, vegetables, water, and so many supplement intakes. According to her, she said that the bodies of these patients are quite different, hence “what works for A might not work for B” she added.
Recognizing this fact, she enjoins sickle cell patients to put social media into good use for much easier access to beneficial information which can help provide emotional and health stability.
She noted that ever since she became her own small doctor by going on line to learn more about this disease, she has been able to embrace it and love her life more. Although no fault of hers born with the disease, she advised carriers who intend to be coupled to think it through before subjecting their unborn children through pains.
As part of the effort in giving some of these patients some sense of belonging, Miss Oluwatoyin Adesola saw the need to establish a foundation in 2006.
Sickle Cell Advocacy and Management Initiative (SAMI) which believes in making life possible has gone all out to make meaningful impacts through their awareness, edutainment and support programmes which include the extra care clinic ,club still standing, touch a cell dance-a-thon, red umbrella walk , touch a cell with Toyin Adesola and still standing publication.
By the sheer size of Nigeria, she remains one of the most affected countries in the world, it is estimated that the prevalence of sickle cell disease is 2-3% of its population and that 150,000 babies are born every year with sickle cell anemia. She, therefore, enjoins other NGOs to rise to the occasion of creating more awareness and ensuring that adequate treatment is being given so much so that these patients would enjoy however short their lifespan may be.
With this prevalence, there is a great and undeniable need for children and young adults to know their hemoglobin genotype status Miss Adesola concluded.